Dialogue 101: Tourette Association of America

Deb Gordon’s guest was Dr. Kevin McNaught, Executive Vice President of Research and Medical Programs for the Tourette Association of America, a non-profit based in New York that strives to make life better for those affected by Tourette syndrome and tic disorders.

Tourette syndrome is a much misunderstood and oft-maligned hereditary disorder which is characterized by involuntary and compulsive tics, movements, and sounds.

“Tourette Syndrome is neurodevelopmental disorder…that primarily affects children…and it’s characterized by motor dysfunction… abnormal movements that are referred to as tics, but for a lot of people with Tourette syndrome there are additional problems that we refer to as associated conditions, so it has a very wide spectrum of clinical features,” said Dr. McNaught.

“For the vast majority of cases of the disorder, we still don’t know what causes those conditions.”

 

Now in its 45th year, the Association has funded more than $20 million in grants for important research and medical programs relevant to those affected by Tourette syndrome.

“We have a better understanding now, as to how many children and adults have the disorder but certainly there still needs to be a lot more work done to get the best prevalence estimates – we think that the numbers are even higher than 1 in 83,” said McNaught.

Dr. McNaught, who along with colleagues is involved in much of the research conducted in the field, discussed the many strides that have been made.

“The Tourette Association has been driving the development of behavioral therapy…this is something that can be as effective as medication in treating tics… and we are very aggressively training care providers across the country to be able to administer this treatment option,” said McNaught.

The organization has enlisted the help of many student ambassadors to speak out and share their stories to help create awareness, in an effort to foster better understanding and help curb the bullying that many people with Tourette and tic disorders experience.

“For a lot of people with Tourette…education and understanding of their condition and how to manage themselves…and how to communicate to parents, to family, to school…will help a great deal …and awareness is so crucial,” said McNaught.

For more information about Tourette syndrome and the Tourette Association of America, visit www.tourette.org.

 

–Deb Gordon/WCBS-FM

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