Tourette Syndrome Program at the Centers for Disease Control and Prevention (CDC) – Children’s Health Act

Since Fiscal Year 2004, the CDC’s National Center for Birth Defects and Developmental Disabilities (NCBDDD) Tourette Syndrome Public Health Education and Research Program has worked to address the public health needs for Tourette Syndrome (TS) and Tic Disorders.  The program was authorized in the Children’s Health Act of 2000.  Public health education can improve the lives of individuals with TS and Tic Disorders and their families, and can help educate communities, professionals and institutions that support the potential for full, productive living for people with TS.  Early and appropriation identification treatment of TS can limit the negative impact of the disorder and it many co-occurring conditions on individuals, their families and communities.  The CDC NCBDDD TS Program is currently working to ensure people with TS and other Tic Disorders reach their full potential by:

  • Partnering with the Tourette Association of America to provide health education and training for physicians, nurses, social workers, educators and the public about TS and related disorders;
  • Funding four sites as part of the Project to Learn about Youth Mental Health (PLAY-MH), a community study looking at how frequently certain mental, behavioral, emotional, and tic disorders occur in school-aged children and how those disorders are treated;
  • Funding the development of a validated screening tool to improve the identification of children with TS and tics;
  • Funding an update of the Diagnostic Interview Schedule for Children, a diagnostic interview or mental emotional and behavioral disorders, including TS;
  • Using data from the 2007 and 2011 National Survey of Children’s Health (NSCH), to document the prevalence and impact of TS (including healthcare, parenting and education) on children in the United States;
  • Analyzing data on symptom onset, diagnostic process, and treatment from the National Survey on the Diagnosis and Treatment of ADHD and Tourette Syndrome (NS-DATA), a follow-up survey of families who reported having a child with ADHD or TS in the 2011-2012 NSCH; and
  • Collaborating with researchers at the University of Rochester and the University of South Florida to define the impact of TS on children, their families and communities.

TAA has word tireless to educate Members of Congress, Senators and their staff on the importance of the CDC Tourette Syndrome Public Health Education and Research Program to the Tourette Sydrome and Tic Disorder community.  An an annual basis, we work with our members, state chapters and youth ambassadors to request continued appropriations at the previously enacted level of $2 million for the CDC TS Program.  In Fiscal Year 2018 (10/1/18 – 9/30/19), the CDC TS Program received $2 million in continued funding.  We need your continued support in the current appropriations process for Fiscal Year 2019 (10/1/19 and 9/30/20)  to ensure continued funding at the previously enacted level of $2 million.  If you have not done so, please go to our action alert to quickly send emails to your Member of Congress and Senators.  If you would like to do more, please reach out to Diana Felner, TAA VP Public Policy, at diana.felner@tourette.org.