On April 5, 2026, our community lost a remarkable light. Lois Kelly passed away unexpectedly, leaving behind a legacy of compassion, brilliance, and unwavering dedication to improving the lives of others.
Her professional journey spanned hospitals, academia, and global biopharma organizations. She mentored colleagues, led complex clinical research programs, and helped shape processes that improved care for people around the world.
In her most recent role as Vice President of Research and Clinical Operations at the National Down Syndrome Society (and formerly with LuMind IDSC), Lois championed the Down Syndrome community. She worked tirelessly to expand clinical trial access for individuals with Down syndrome, advocating for equity and inclusion in research to help address some of the community’s most pressing medical challenges.
Lois oversaw the Longitudinal Investigation for the Enhancement of Down Syndrome Research (LIFE-DSR), a five-year observational study that followed 270 adults with Down syndrome across the United States. Completed in 2024, initial analysis of the study data provides researchers with insight into clinical profiles specific to Down Syndrome-associated Alzheimer’s disease. Data analysis continues, with additional findings expected to be published in late 2026.
Additionally, her vision shaped MinDSet Down Syndrome, our newly launched online training for clinical researchers. Lois recognized the need for better tools and knowledge to support inclusive research practices to solve some of the medical challenges our community continues to face. MinDSet exists because she believed in closing the gaps in understanding and ensuring individuals with Down syndrome are meaningfully included in clinical studies.
Although Lois is no longer here to witness the impact of her work, her influence within the Down syndrome community is enduring. The number of lives Lois touched is immeasurable, and her commitment to empowering individuals with Down syndrome will continue to guide and inspire our work for years to come.
In celebration of her life and legacy, her family invites those wishing to honor her memory to support the National Down Syndrome Society or plant a tree in her name --- two causes that reflect her love for people and the natural world.
Lori Ostiguy (left) and Lois Kelly (right) receive the 2024 Collin Lis Humanitarian Award honoring an employee or volunteer of a Down syndrome organization whose acts of kindness have helped make a difference in the world.