New Presentation: Executive Function

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This new, 30-minute presentation explores the definition of “executive function” or EF — time management, organization, task completion — and some of the signs students exhibit when struggling with EF.

First-time college students with ADHD and executive function disorders are at high risk for failure, so early identification and intervention is critical.

Sarah Crowther, M.Ed., offers tips and techniques to help students develop EF skills. Ms. Crowther is Director of Student Success and First-Year Programming at Culver-Stockton College in Canton, Missouri.

Discovery of Rare Genetic Mutation Associated with TS

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While the underlying cause in the majority of Tourette Syndrome cases remains elusive, there is compelling evidence that, in many families with a history of the disorder, the inheritance of certain genes could cause or contribute to the development of the condition.

Dr. Matthew State and colleagues at the Yale School of Medicine have published a research study in The New England Journal of Medicine, in which they discuss a defect in a gene called L-histidine decarboxylase or HDC. The researchers believe this defect is responsible for the development of TS in two generations of a particular family: a father and eight of his children. However, this gene defect was not found in hundreds of other families with TS, whose DNA was analyzed in the same study. Accordingly, it appears the HDC gene defect is a rare cause of TS.

Regardless, the discovery by Dr. State and colleagues could be a key development in our understanding of the brain changes that occur in TS patients. HDC is important for the production of histamine, which is well known for its role in allergies, but it is also present in the brain, where it is involved in communication between nerve cells. The HDC gene defect in the family with TS appears to interfere with the production and levels of histamine in certain parts of the brain. This finding raises the possibility that drugs that can alter the histamine systems in the brain might have a therapeutic benefit for TS. Thus, the study published by Dr. State and his colleagues could open new avenues of research and discovery.

The National TSA was instrumental in referring the noted family to Dr. State’s group. In addition to the Yale study authors, two members of the TSA’s International Consortium for Genetics (David Pauls, Ph.D., and Harvey Singer, M.D.) and a member of the TSA’s Medical Advisory Board (Donald Gilbert, M.D.) participated in the study.

We encourage all members of the TS community to assist researchers in their efforts to better understand and develop therapies for TS.

(Also reference this related WSJ report from earlier this month. A subscription may be required to read the entire article.)

New Print PSAs

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Just in time for Tourette Syndrome Awareness Month, which starts May 15, the National TSA has distributed two print public service announcements (PSAs).

One is geared to youth — and one is geared to adults.

Feel free to download, print, distribute, and post these documents in appropriate locations — schools, libraries, doctor’s offices, etc. — to help raise awareness of Tourette Syndrome.

URGENT: Comments Deadline April 20

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We apologize for not posting this information sooner.

The American Psychiatric Association (APA) has released a draft of the proposed diagnostic criteria for the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), expected to be finalized and published in 2013. The public is encouraged to review the current draft and offers comments via the DSM-5 Web site by April 20.

To view and comment on the proposed changes, go here. The National TSA’s position on the proposed changes is available here.

The diagnostic criteria in the DSM are used widely by physicians, insurance companies, and other professionals for diagnosing medical conditions and managing medical-care reimbursements for individuals with neuropsychological disorders, including Tourette syndrome.

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Commenting Instructions

At the home page of the APA’s DSM-5 Web site, you should see a list in the center of the page. Find and click on this item: “Disorders Usually First Diagnosed in Infancy, Childhood, or Adolescence.”

Scroll down the new page. Toward the bottom, you should see “Tic Disorders.” Click on “307.23 Tourette’s Disorder.”

Again, scroll down the new page until you see the option: “Register Now.”

After clicking “Register Now,” fill in the form with your name and contact information; answer the security question and submit the page.

You will be sent an email with a temporary password.

Once you have this temporary password, go back to the APA’s DSM-5 Web site and log in (at the top, right-hand side of the screen) with your username and the password that was emailed to you.

After logging in, you will be taken back to the home page of the APA DSM-5 Web site. Again, click on “Disorders Usually First Diagnosed in Infancy, Childhood, or Adolescence” and then “307.23 Tourette’s Disorder.”

At this point, now that you’re registered, you should see a comment box at the bottom of the screen. Type in your comment, answer the security question, and submit your comment. You should receive a confirmation saying that your comment has been submitted.

Next Meeting: April 26

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Please make plans to attend our next meeting. In addition to hearing from a guest presenter, we will be electing board members and officers.

The chapter needs your involvement.

Check the Meetings & Events page for details.

New Presentation: Tics and CBIT

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The latest installment in the national TSA’s online information series is now available: “What are Tics and What is CBIT?”

This 31-minute presentation has information that may be of particular interest to school psychologists, parents, and educators.

School psychologists can play a key role in the identification of Tourette Syndrome (TS) and its symptoms. Some also work with parents and students to find ways to help manage both tic symptoms and the associated challenges, academic and social.

“Comprehensive Behavioral Intervention for Tics,” or CBIT, is a new, evidence-based, non-pharmacological treatment option for tic management, developed by members of the TSA Behavioral Sciences Consortium.

Douglas W. Woods, Ph.D, is the director of clinical training and a professor of psychology at the University of Wisconsin-Milwaukee. In this presentation, he reviews what tics are and provides an overview of the CBIT treatment intervention.

While CBIT may not be appropriate for all TS children, we hope you find this program informative.

TSA National Conference Update

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The schedule for the TSA National Conference, April 15-18, is now available online.

We hope you will find the conference program interesting and relevant. Even for those who have been to the conference before, there are always new updates on perennial topics and new presenters to share their expertise. Time has also been scheduled each day for networking.

The conference registration page can be found here.

Joshua Camp

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Joshua Camp can be a wonderful experience for children who have Tourette Syndrome and/or associated disorders and who have completed the third through eighth grades.

This year’s camp will be held June 13-17 at the Rotary Youth Club Camp, next to Lake Jacomo in Lee’s Summit, Mo.

Check here for an application and additional information.

Contribute to our Chapter’s Future

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If you are interested in serving on our chapter board, please contact Maureen Downey at 314-892-0272 or modowney1@sbcglobal.net. She will forward your name to the nominating committee. Elections will be held at our Monday, April 26 meeting; details to be announced.

Next Support Group Meeting

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Our next support group meeting in the St. Louis area is set for March 29. This meeting is specially designed for fathers, stepfathers, grandfathers, and other men who play a significant role in our TS families.

Check here for details.