September 18, 2020

Van Hollen, Menendez Introduce Tourette Syndrome Bill to Ramp Up Federal Efforts to Develop New Treatment

Tourette Association: TS occurs in 1 in 160 (0.6%) school-aged children; estimated 50% go undiagnosed

U.S. Senators Chris Van Hollen (D-Md.) and Bob Menendez (D-N.J.) introduced the CARE for Tourette Syndrome Act of 2020 that would expand and intensify the National Institutes of Health’s (NIH) efforts to discover new treatments for Tourette Syndrome (TS). The legislation is cosponsored by Senators Chris Murphy (D-Conn.) and Kirsten Gillibrand (D-N.Y.). 

“Tourette Syndrome impacts the lives of hundreds of thousands of Americans. And yet, there is still relatively little known about the disorder – including how to cure it or best treat it. Investing in more research on Tourette Syndrome is key to both improving our understanding and to the discovery of new treatment options. And as our nation’s leading medical research center, no entity is better equipped to do this research than NIH,” said Senator Van Hollen.  

“With hundreds of thousands of our children and teens afflicted with Tourette Syndrome, this often misdiagnosed disorder deserves greater attention and more intensive research from our nation’s scientific institutions like NIH,” said Senator Menendez. “Too many families are struggling to do all they can to ease their children’s suffering and we must do more to develop new treatments for TS to help unlock every child’s full potential.” 

“Too many families across Connecticut struggle with Tourette’s Syndrome, and we must listen to their calls for more support,” said Senator Murphy. “That’s why I’m glad to introduce legislation to enhance research and development at designated Centers that will provide wrap around services to treat those living with Tourette’s.” 

The Tourette Association currently estimates that one out of every 160 American children between the ages of five and 17 has TS. When including other tic disorders, the prevalence is estimated to be about one percent of all U.S. children.  

“The introduction of the CARE for Tourette Syndrome (TS) Act is incredibly important to those living with Tourette Syndrome and other Tic Disorders,” said Amanda Talty, President and CEO of the Tourette Association of America. “This legislation would direct the NIH to allocate existing funding that can expand, intensify and coordinate TS research advances that can vastly improve treatment and care across the nation. In addition, we are excited at the idea of building upon our network of outstanding research and clinical care centers through the establishment of the Collaborative Research Centers on Tourette that could enhance coordinated efforts and data collection in a more deliberate way. This opportunity has the potential to further TS research in genetics, Comprehensive Behavior Intervention for Tics effectiveness and methodologies, Deep Brain Stimulation, neural pathways/circuitry and other key areas which are critically important to our community.” 

The CARE for Tourette Syndrome Act would build on current NIH activities and directs NIH to refocus existing funds towards:

  • Expanding and intensifying data collection on TS to improve information on the prevalence of the disorder including data on co-occurring conditions and variations across populations and geographic regions 
  • Establishing Collaborative Research Centers for Tourette syndrome to conduct in-depth, multidisciplinary TS research in the fields of developmental neurobiology, psychology, genetics, pharmacology, psychopharmacology and neuroimaging.  Eligible entities include academic and other research institutions, acting independently or in a consortium, and with broad geographic diversity.
TS is a neurological disorder for which there is no cure. It’s characterized by repetitive, stereotyped, involuntary movement and vocalizations called tics. The first symptoms are typically noticed in childhood, and while TS can be a chronic condition, symptom improvement often occurs in the late teens and adulthood.  

Although the cause of TS is unknown, research indicates that TS may have genetic basis and that abnormal signaling between brain circuits plays a causal role. Several therapies have proven successful at attenuating tics and improving psychosocial functioning. 

The NIH currently supports basic and clinical research on the genetics, developmental neurobiology, and psychopharmacology of TS through the National Institute of Neurological Disorders and Stroke (NINDS) and the National Institute of Mental Health (NIMH).