A Review of the Tourette Association of America’s Annual Conference, TIC-CON 26
I recently had the privilege of attending and presenting at the Tourette Association of America’s annual conference, otherwise known as TIC-CON, in Nashville, TN. The conference was very informative and a great opportunity to connect with other clinicians, researchers, and individuals and families with lived experience. Charles Galyon, PhD, Amy Mariaskin, PhD, and I presented on Employing Self-Acceptance in Tourette’s and Neurodiversity.
In this recap, I am going to attempt to cover three important topics:
1) What is the Tourette Association of America?
2) What were some key takeaways from this year's conference
3) How can people find support
The Tourette Association of America (TAA) was founded in 1972. It is dedicated to making life better for all individuals affected by Tourette's and Tic disorders. The organization has more than 32 local chapters and 80 support groups and has a long-standing partnership with the Centers for Disease Control. The organization is the preeminent nationwide organization for providing ongoing support, increasing awareness and advancing research for Tourette and Tic Disorders.
Secondly, what were some key takeaways from this year's conference? There were many important and informative sessions. One of the key takeaways is the chronic nature of these presentations. While there are some hopeful new treatment methods, the predominat treatments continue to be therapy, medication or both. One session reviewed the adult Tourette syndrome phenotype, indicating roughly 10-20% of individual with TS experience tic remission in adulthood and at least 40% of adults with TS avoid social situations because of tics. Other sessions highlighted the increased co-occurance of chronic tic disorders with other presentations, like OCD and ADHD.
The updated statistics from the TAA, which were updated in August 2022 include, “1 out of 50 children aged 5-14 in the U.S. have Tourette Syndrome or another persistent Tic Disorder. Of those, an estimated 50% go undiagnosed. Approximately 1.4 million adults and children in the United States have Tourette Syndrome or another persistent Tic Disorder.” (Tinker, Bitsko, Danielson, Newsome, Kaminski, 2022.)
There are some additional promising treatments discussed during this year’s conference. One such treatment is a new device, Neupulse, being trialed in the UK in 2026, and is likely to be trialed in the United States after.
If you have Tourette’s or a persistent Tic disorder, or have a loved one who does, the annual TIC-CON conference is a wonderful way to connect with others, learn about the latest updates, research and treatments. The conference has been alternating between in-person and virtual formats, so next year’s TIC-CON should be held virtually if you were unable to attend this year.
If you have not had the chance to learn about the Tourette Association of America, I strongly encourage you to head over to www.tourette.org There, you can locate support groups, find a local chapter or find a clinician for support on your journey.