In June of this year, the Tourette Association of America chose Washington University as a Center of Excellence! This designation recognizes the longstanding breadth and depth of expertise in patient care and research of our colleagues here at WUSTL and of the Greater Missouri TAA chapter. Hooray and thank you!
However, we know we haven’t arrived yet. For instance, we know it can take time to find a provider, we’d like to have more formal community input on our research initiatives, and we’d like better coordination of our research and clinical activities. We would be glad to hear your suggestions about areas that need work.
It seems like there is opportunity to begin research at an earlier age. I was under the impression TS improved with age, but that’s not been the case with my family members. In addition, it’s not only tics that come and go but also extreme fears, anxiety and OCD.
Also, wondering in what manner I can help outside of monetary donations.
You’re right. Our New Tics study (http://www.NewTics.info) enrolls children as young as 5 years old to find out if we can learn to predict in advance whose tics will improve and whose won’t.
You’re right about other symptoms, too. Different symptoms appear and disappear at different ages, and your family’s experience is typical. Figure 2 in this article shows some averages for the starting date of various symptoms.
As to how you can help, thank you very much for the offer! Feel free to refer people to our center (http://www.tics-R.us) for research or clinical care. We also welcome new ideas for research or feedback about what we need to improve. We’ll keep you in mind for future projects.