Research Opportunity for Interested Participants

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Dr. Kevin Black (Washington University, St. Louis) is conducting a study with children between the ages of five and 14 who are experiencing a recent (past three months) onset of “tics” — repetitive, involuntary sounds or movements such as eye blinking, sniffing, abdominal tensing or making small noises.

The purpose of the research is to compare children who go on to develop Tourette Syndrome (TS) with those who do not.

Participants are required to make four visits over approximately 12 months. Compensation is available.

For more information, including whom to contact if you’re interested in participating, please visit this site.

October Meeting

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Our next meeting will be held Mon., Oct. 25, starting at 7 p.m. in the Gillis Board Room at St. John’s Mercy Medical Center (615 S. New Ballas Road, St. Louis, MO 63141).

Following our well-attended September Students’ Panel, we are bringing back the very popular “Ask the Doctor/Ask the Pharmacist/Ask the Educator” Panel. This year’s panel will feature Maureen Downey, a TS parent and pharmacist; Lynn Dunlap, a TS parent, former special-education teacher, and currently a psychological examiner with the St. Louis County Special School District (SSD); and Nanette Ford, a speech and language pathologist for SSD.

Bring your questions and concerns to this special session — and ask friends, family members, and teachers to join you.

New Tourette Syndrome Documentary

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A new, hour-long documentary, “Tourette’s Uncovered,” premieres tonight, Sept. 13 at 8:00 pm CT, on Discovery Health, profiling four different TS children and their families.

Check local cable or satellite listings to determine if Discovery Health is available on your channel lineup. The documentary will be re-televised several times. (All times listed at the Discovery Health Web site are ET.)

Bullying Prevention

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The national Tourette Syndrome Association (TSA) Education Committee is offering a new online audio conference on the subject of “Bullying Prevention.”

In this conference, Julie Hertzog — Bullying Prevention Project Director for PACER (Parent Advocacy Coalition for Educational Rights — talks about types of bullying, the increase in cyber-bullying, effective anti-bullying programs, and the need for communities to unite in their knowledge and response to the problem.

New Articles for Adults/Young Adults with TS

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Three new articles have been added to the ever-growing “Living With TS” section of the TSA website.

In addition to these new articles, you will find on this page a range of articles and features designed to inform and support people with Tourette Syndrome. Many of the topics on this page have been suggested by adults and young adults in the TSA community.

Video Sessions Available

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Three informative video sessions — filmed at the April 2010 Tourette Syndrome Association (TSA) National Conference, to help children, teens, young adults and families — are now available for viewing at the National TSA Website.

Introducing MD-TV

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MD TV is a new, interactive Web television station with medically oriented content, created by Dr. Evan Trost, a physician with Tourette Syndrome. The first episode aired yesterday. In several episdoes over the next few weeks, Dr. Trost plans to talk more about TS, including insights on his life with the disorder.

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.