Tourette Association of America HQ

Since 1972, the Tourette Association of America (formerly the Tourette Syndrome Association) has pursued a vision of creating a better world for all people affected by Tourette and Tic Disorders.

- Raising public awareness and fostering social acceptance.
- Working to advance scientific understanding, treatment options and care.
- Educating professionals to better serve the needs of children, adults and families challenged by Tourette and Tic Disorders.
- Advocating for public policies and services that promote positive school, work and social environments.
- Providing help, hope and a supportive community across the nation.
- Empowering our community to deal with the complexities of this spectrum of disorders.
We offer resources and referrals to help people and their families cope with the problems that occur with TS. Our membership includes individuals, families, relatives, and medical and allied professionals working in the field.

The Tourette Association of America is comprised of approximately 32 chapters, 81 support groups, and 9 Centers of Excellence across the country. Each TAA chapter is charged with creating programs meant to aid in community education and support. For over a decade, the TAA has partnered with the CDC to produce educational materials, and facilitate programming to educators, schools, patients, and medical professionals. Our nine Centers of Excellence, in 16 of the nation's top medical and research institutions, promote the highest level of care, research, education & training, and advocacy and awareness for tic disorders.

Under the guidance of our Medical and Scientific Advisory Boards, the TAA provides seed funding to scientists researching causes of and treatments for Tourette; since the inception of the program the TAA has awarded over $21 million to 281 scientists. Additionally, since 2003 every $1 of TAA grant funding has helped investigators to obtain approximately $10 in grant funding from the National Institutes of Health (NIH).

Tourette.org is a tremendous resource for information on Tourette, with targeted information for families, children, teens and adults managing their diagnosis as well as contact information for providers and local chapters, and information on all medical and research programs including. The site has a rich resource library, including articles, pdfs, and videos that provide in-depth information about Tourette Syndrome and Tic Disorders. In addition to our website, the TAA has successful social media platforms to fight stigma, boost awareness, and advocate for the needs of the TS community.

The Tourette Association of America's Public Policy office advocates for policies that support the Tourette Syndrome and Tic Disorder community. A crucial part of our advocacy includes our network of chapters, members, and Youth Ambassadors who work with our office to communicate directly with their elected officials. This Youth Ambassador program identifies and trains children from across the country looking to advocate on behalf of themselves and all others with TS at their schools, local institutions, and nationally to increase understanding of this disorder.

The TAA was involved in the passage of the 21st Century Cures Act (2016), including the National Neurological Conditions Surveillance System, and the Children's Health Act (2000), which is the only government program funding work on Tourette Syndrome to educate parents and medical and education professionals and research prevalence of TS, demographics, and other key information. We continue to advocate in Washington to build relationships with like-minded organizations and push for legislation that will aid all people impacted by TS and Tic Disorders.

Our reach via social media continues to grow, seeing an increase to almost 10 million social media million views from 550 thousand in the last fiscal year; we will continue to find ways to expand awareness of the disorder even further across the country.

Our program with the CDC has delivered over 1,000 free educational opportunities (in person and online) to nearly 350,000 care providers, school personnel, families, individuals, and members of the general public. We are working to expand our assessment of impact for this program and engage more closely with Centers of Excellence and TAA chapters.

What is impressive about the TAA Research & Medical programs is not just the numbers of dollars invested, but also the number of advances made, which include:
Findings of gene, chromosomal loci and genetic variations that cause rare forms of TS, increase the risk of developing the disorder, and link TS with other conditions such as OCD.
- Facilitated the first FDA-approval of a drug for Tourette in over 30 years (Abilify[aripiprazole]).
- Showed that Deep Brain Stimulation (DBS) can effectively treat severe TS by stimulating specific areas in the brain and have developed and published guidelines for its use in clinical practice.
- Development of and clinical demonstration that Comprehensive Behavioral Intervention for Tics (CBIT), a medication-free behavioral therapy, is as effective as drugs in some individuals with TS.
- Launched a Centers of Excellence program, with 9 inaugural Centers at 16 of the nation's leading healthcare/academic institutions, to develop, implement, and maintain best practice guidelines to achieve the highest standard of care for people with Tourette and Tic Disorders.
- Hosted the 1st World Congress on Tourette Syndrome & Tic Disorders, which was the largest gathering of Tourette clinicians and scientists in the history of the disorder, with more than 430 attendees from 38 countries on 6 continents.
- Funding and supporting ongoing development of novel and promising treatment approaches, some of which already have obtained TS patent protection.
- Establishment of a wide range of resources (Research Grants and Projects Database, Brain Bank, Patient Recruitment Program, Gene Sample Collections), consortia (International Consortium on Genetics, Neuroimaging Consortium, International DBS Registry, Behavioral Science Consortium), and partnerships (eg. NIH, CDC)