GLOBAL Experts Educate Families, Advance Collaboration, and Break Attendance Records at the DSAIA Leadership Conference and NDSC Annual Convention

GLOBAL Experts Educate Families, Advance Collaboration, and Break Attendance Records at the DSAIA Leadership Conference and NDSC Annual Convention

The GLOBAL Down Syndrome Foundation (GLOBAL) was proud to spend an inspiring and impactful week in Orlando, Florida, joining thousands of advocates, families, researchers, healthcare professionals, and community leaders for the Down Syndrome Affiliates in Action (DSAIA) Leadership Conference and the National Down Syndrome Congress (NDSC) Annual Convention at the Signia by Hilton Orlando Bonnet Creek.

The week began with the DSAIA Leadership Conference, where more than 140 executive directors, board members, and staff from local Down syndrome organizations across the country gathered to learn, collaborate, and strengthen their collective impact. This year’s conference marked an important milestone as it was the first DSAIA event since NDSC Executive Director Jim Hudson announced the merger of DSAIA and NDSC—a significant step toward building a stronger, more unified national network serving individuals with Down syndrome and their families.

Under the leadership of Jim Hudson and Tiffany Williams, DSAIA’s new Program Coordinator, the two-day pre-conference created valuable opportunities for affiliate organizations to exchange ideas, share best practices, and develop new partnerships. Throughout the conference, the GLOBAL team presented multiple research & medical care sessions, reinforcing its commitment to improving healthcare, advancing research, and empowering organizations that serve the Down syndrome community.

GLOBAL Roundtable Sets New Attendance Record

One of the week’s highlights was the annual GLOBAL Roundtable, proudly sponsored by Glaukos, which welcomed a record-breaking 400 attendees. Since its inception, the Roundtable has educated more than 5,000 self-advocates, parents, caregivers, and healthcare professionals, making it one of the convention’s premier educational events.

As one of GLOBAL’s longest-standing collaborations with NDSC, the Roundtable continues to be a valuable benefit included with NDSC Annual Convention registration. Attendees consistently rate the program an outstanding 4.8 out of 5, reflecting both the quality of the presentations and the practical information families can immediately apply.

The Roundtable opened with welcoming remarks from NDSC Executive Director Jim Hudson, GLOBAL President and CEO Michelle Sie Whitten, GLOBAL Vice President for Research and Medical Care Bryn Gelaro, and self-advocate and public speaker Elizabeth Romanick, setting the stage for a full day of cutting-edge education and meaningful discussion.

This year’s impressive lineup of internationally recognized Down syndrome experts included:

• Joaquín Espinosa, PhD, Executive Director, Linda Crnic Institute for Down Syndrome — Research Breakthroughs Accelerating Personalized Medicine for Down Syndrome
• Melissa Parisi, MD, PhD, Chief of the Intellectual and Developmental Disabilities (IDD) Branch at the Eunice Kennedy Shriver National Institute of Child Health and Human Development — NIH INCLUDE Project: How Researchers and Families Are Working Together to Support Health Across the Lifespan
• Lauren Ptomey, PhD, RD, LD, Associate Professor and Registered Dietitian, University of Kansas Medical Center — Evidence-Based Strategies for Weight Management in Adolescents and Adults with Down Syndrome
• Mary Pipan, MD, Director of the Trisomy 21 Program at Children’s Hospital of Philadelphia — The Complexity of the GI Tract in Down Syndrome: From Esophagus to the Rectum, It’s All One Tube
• Allison Meyer, PhD, Director of Psychology at the Sie Center for Down Syndrome at Children’s Hospital Colorado — Supporting Emotion Regulation in Down Syndrome
• Nick Gagner, DMD, Senior Dental Director at Denver Health and dentist at the Denver Health GLOBAL Adult Down Syndrome Clinic — More Than Teeth: Systemic Health, Access Barriers, and Oral Care for People with Down Syndrome

The presentations highlighted the latest advances in medical care, research, nutrition, behavioral health, oral health, and personalized medicine, providing attendees with practical, evidence-based information that supports healthier lives across every stage of the lifespan.

The impact of the Roundtable was perhaps best captured by one returning attendee.

“So much hit home this year!” said Paula, a parent from Louisiana who has attended the GLOBAL Roundtable at NDSC for multiple years. “It’s like GLOBAL tapped into my adult child’s medical records! Thank you for hosting!”

Advancing Research Beyond the Classroom

Research & medical care education wasn’t the only focus during convention week. GLOBAL affiliates and NIH INCLUDE-funded researchers from the Linda Crnic Institute for Down Syndrome were onsite enrolling participants into the Human Trisome Project, helping expand one of the most important research initiatives dedicated to improving health outcomes for people with Down syndrome.

Researchers and clinicians from Boys Town National Research Hospital also conducted hearing research during the convention, giving families the opportunity to contribute directly to studies that will improve care for future generations.

In addition to the Roundtable, GLOBAL affiliates remained busy throughout the convention. Team members participated in the Down Syndrome Medical Interest Group-USA Annual Symposium, met with self-advocates during the NDSC Youth & Adult Conference, and delivered 13 educational sessions covering topics that ranged from pediatric healthcare updates and Alzheimer’s disease clinical trial readiness to a preview of the forthcoming second edition of the Adult Medical Care Guidelines for Adults with Down Syndrome.

Looking Ahead

The excitement and momentum generated throughout the week reinforced the importance of bringing together families, self-advocates, clinicians, researchers, and community leaders to learn from one another and continue advancing the future of Down syndrome research and care.

GLOBAL is already looking forward to continuing this tradition next year, when the DSAIA Leadership Conference and NDSC Annual Convention head to Denver, Colorado. As the home of GLOBAL, the Linda Crnic Institute for Down Syndrome, the Sie Center for Down Syndrome, the Alzheimer’s and Cognition Center, and the Adult Clinic, Denver will provide an exciting backdrop for another unforgettable week of education, collaboration, groundbreaking research, and community.