Individuals with Down syndrome are predisposed to a variety of medical conditions across the lifespan. While epilepsy, autism spectrum disorder, and Alzheimer's disease are well known and well-studied in this population, an emerging neurocognitive disorder of young adulthood called Down Syndrome Regression Disorder (DSRD) has become increasingly recognized over the last few years. Individuals with this condition undergo a rapid deterioration in their cognitive abilities in the teens and 20s which can cause mutism, hallucinations, delusions, catatonia, loss of ability to do activities of daily living, and altered awareness where individuals are "off in their own world". While this condition is difficult for the individuals who develop it, it is also devastating for families, friends and an individual’s social circle.

Dr. Jonathan Santoro and the neuroimmunology team at the Children's Hospital Los Angeles and Keck School of Medicine of the University of Southern California have made it their mission to identify, diagnose and treat this rare condition. Dr. Santoro has pioneered research in identifying an autoimmune component to DSRD and has demonstrated that individuals with this condition have dramatic responses to immunotherapy. CHLA has become an international hub for advancing therapeutic interventions for DSRD and opened the first clinical trial for this disease in 2023.

With your help and support, Dr. Santoro and the neuroimmunology team can continue to keep the accelerator on research in Down syndrome and DSRD. Donations will go directly to research efforts for DSRD and helping less fortunate families with this condition seek care at CHLA. Your tax-deductible gift will make a difference in the lives of many young persons with Down syndrome and their families. Any amount, great or small, will be impactful and beneficial to finding a cure for DSRD and other neurological disorders in persons with Down syndrome.

Since 2023, we've raised a little more than $21,800 thanks to supporters like you.

Please help us continue to lead the way in the care of individuals with DSRD!