Global Down Syndrome Foundation urges continued NIH support for INCLUDE research network

Michelle C. Whitton, cofounder and chief executive of the Global Down Syndrome Foundation, told the House Appropriations Subcommittee that NIH's INCLUDE initiative has catalyzed Down syndrome research across multiple institutes and produced new clinical cohorts, whole‑genome datasets and clinical trials.

Whitton said that before INCLUDE, Down syndrome research was concentrated at NICHD and that the new approach now involves 18 NIH institutes and centers, including 11 that are investing in Down syndrome research for the first time. She described concrete outputs — a data coordinating center with more than 9,000 participants and 4,000 whole‑genome sequences, clinical cohorts and 13 clinical trials for conditions including autoimmune disease and Alzheimer's in people with Down syndrome — and asked lawmakers to preserve NIH funding and research infrastructure. "We are entering a new era when it comes to valuing people with Down syndrome," Whitton said.

Subcommittee members acknowledged bipartisan origins of the INCLUDE initiative and emphasized the importance of sustained NIH investment for basic and translational research. Members also voiced concern about proposed caps on indirect costs and recent personnel changes at NIH, which witnesses said could threaten ongoing research.

Whitton concluded by offering Global as a resource for the committee and NIH as work continues on research priorities and agency leadership transitions. The testimony will be entered into the hearing record for consideration in FY26 appropriations.