Dr. Jonathan Santoro

Written By Agape Fund
 
 

Dr. Jonathan Santoro is a leading NIH-funded physician-scientist and pediatric neurologist with specialty training in neuroimmunology. Since 2021, The Agape Fund has proudly supported Dr. Santoro’s pioneering research into Down Syndrome Regression Disorder (DSRD), beginning before the receipt of his $5.3M NIH grant in 2023 (LINK). Our funding has helped underwrite staffing, equipment, and key operational costs that make this research possible.

We remain deeply committed to fueling this important research and enabling Dr. Santoro and his team to continue pushing the boundaries of what is understood (and what is possible) for children affected by neurodegenerative disorders. Beyond DSRD, this work also examines the broader links between neurodegenerative conditions, including Alzheimer’s disease and related disorders, providing a unique opportunity to explore shared biological mechanisms and pathways.

At its core, this research reflects a data-driven belief: that there is still much we do not understand, and meaningful progress requires letting evidence guide discovery. By investigating connections across rare and underexplored conditions, Dr. Santoro’s team aims to uncover insights that may inform earlier detection, improved diagnostics, and therapeutic interventions that benefit not only children with DSRD, but potentially the broader population of individuals affected by neurodegeneration.

Importantly, this work also holds promise for informing future systems of care and treatment access. Insights from these studies could help pave the way for reimbursable, evidence-based interventions that support cognitive and neurological health in affected communities, ensuring that the benefits of research translate into meaningful, actionable outcomes.

To learn more about Dr. Santoro’s research, we invite you to explore the materials linked below:

  • A Comparative Effectiveness Study of Lorazepam or IVIg Versus no Treatment; March 2026 (LINK)

  • Serum and cerebral folate are normal in Down Syndrome Regression Disorder; January 2026 (LINK)

  • Unexplained Regression in Down syndrome; August 2022 (LINK)

  • Evidence of Neuroinflammation and Immunotherapy Responsiveness in Individuals with DSRD; June 2022 (LINK)

  • Down Syndrome Disintegrative Disorder: A Clinical Regression Syndrome of Increasing Importance; June 2020 (LINK)

 
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Dr. Dan Gordon