WASHINGTON, D.C. -- U.S. Senator Bob Menendez (D-N.J.), a senior member of the Senate Finance Committee that sets national health policy, today reintroduced the CARE for Tourette Syndrome Act of 2021 that would direct the National Institutes of Health (NIH) to discover new treatments for Tourette Syndrome (TS) and allocate funds toward the expansion of federal programs. An estimated one in every 100 school-aged children are diagnosed with TS or other related Tic Disorder, including approximately 20,110 in New Jersey.


The bill is cosponsored by Sens. Kirsten Gillibrand (D-N.Y.), Chris Van Hollen (D-Md.) and Chris Murphy (D-Conn.).


“Thousands of New Jersey children and teens living with Tourette Syndrome deserve greater federal support and resources to help them live successful lives,” said Sen. Menendez. “Too many families in New Jersey and across the country are struggling to ease their children’s suffering from Tourette Syndrome. This bill will help tremendously in developing new treatments to unlock every child’s full potential.”


TS is a neurodevelopmental disorder, for which there is no cure, characterized by “tics,” which are repetitive, involuntary movements and sounds. Tics can include arm jerking, head bobbing, grunting, or shouting. While symptoms and severity vary between individuals, severe tics can be painful, debilitating and greatly reduce quality of life. Symptom improvement often occurs during late adolescence, however, TS can be a lifelong condition for some individuals.


The CARE for Tourette Syndrome Act builds on the NIH’s current activities related to TS. Specifically, this legislation would: 


  •        Expand and intensify data collection on the prevalence of TS, co-morbid conditions, and the availability of medical and social services. 


  •        Establish Centers of Excellence to undertake extensive research into the causes, treatments, early detection, and prevention of TS. The Centers will conduct in-depth, multidisciplinary TS research in the fields of developmental neurobiology, neuroscience, genetics, psychology, and pharmacology. Eligible entities will include academic and other research institutions, acting independently or in a consortium, with broad geographic diversity.  


“The CARE for TS Act will provide and expand much needed in-depth research and data collection to better understand Tourette Syndrome and its co-occurring conditions,” said Amanda Talty, President and CEO, Tourette Association of America. “As the only national organization serving the TS community, we are ever invested in supporting research to improve diagnosis, treatment, and care. The increased collaboration of researchers will serve as a launching pad to take Tourette Syndrome research to new levels.”


Sen. Menendez last introduced this bill in 2020.