New TS Education DVDs

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TSA’s newest educational resource is now available, free of charge. Filmed at a full-day, live presentation, “Tourette Syndrome in The Classroom, School & Community” features the TSA Education Committee addressing a wide range of related topics.

As the title suggests, the program is designed to inform teachers, school nurses, psychologists, social workers, clinicians, bus drivers, administrators, and others about TS and ways to recognize and address TS inside and outside the classroom.

There are 16 chapters on the two-disc set. Viewers have the choice of selecting individual chapters or watching the entire program in one sitting.

Parents may want to suggest that their children’s teachers watch the first chapter on the first disc, “An Introduction to Tourette Syndrome,” as well as the sections on ADHD and OCD, or other topics they deem appropriate.

This resource is made available through the professional education outreach partnership between the national Tourette Syndrome Association (TSA) and the U.S. Centers for Disease Control & Prevention (CDC).

To obtain a free copy, while supplies last, follow this link. Please allow up to six weeks for delivery and observe the limit of one set per household.

December Event

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If your teens are looking for an opportunity to meet and socialize with other TS teens, the Missouri TSA chapter is hosting a teen pizza night on Saturday, December 10, from 7 to 9 p.m., at J.J. Twigs Pizza, 2964 Dougherty Ferry Rd. (at Dougherty Ferry and Big Bend) in St. Louis County.

Food and soft drinks will be covered by our chapter. Parents can either drop off their teenage children, or stay and visit with each other.

If interested, please contact Lynn Dunlap at lmchd52@gmail.com by or before December 8. We hope to see you there.

TS Documentary Now Available Online

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“Different is the New Normal,” a film that demystifies Tourette Syndrome, is now available for online viewing.

This documentary chronicles the life of Ariel Small, a 16-year-old boy with Tourette Syndrome. It premiered last month on WNET in New York. We encourage you to contact your local PBS station and request that they air “Different is the New Normal,” so that it can reach a larger audience.

For additional information about this documentary, visit the TSA website.

October Meeting

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You’re invited to join us at 7 p.m. on Tuesday, October 25, at Mercy Hospital (615 S. New Ballas Road, St. Louis, MO 63141) in the dePazzi Bentley Room, Doctors Medical Building, accessbile through the vonGontard Conference Center doors between Towers A & B. The room is to the left.

Our speaker will be Dr. Matthew Worth, a nationally recognized chiropractic neurologist. He will address how the brain functions in children with Tourette, ADHD, Autism, and learning disorders. He will also speak to the services available at the new West County Midwest Institute for Neurological Development (MIND), which is the only brain-based treatment/educational center in the Midwest dedicated to the evaluation and management of neurobehavioral and neurodevelopmental disorders.

Also, we will be trying something new at this meeting, offering a Lego Club gathering for kids. Activities will include cooperative play with Lego’s and interactive social-skills games. If your children would be interested in some fun and social time with other TS kids, please bring them along.

September Meeting

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Tourette Syndrome families are invited to join us Sunday, Sept. 25, from 2 to 5 p.m., for pizza and fun activities, as we gather again to start the new school year.

There will be opportunities for kids to get to know one another and parents to network. New teacher packets will also be available.

This event will be held at Destiny Church, 1809 Des Peres Road in St. Louis County, just off of I-270, between Clayton and Manchester Roads.

We hope to see you there.

An Evening of Cheers with Brad Cohen

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Here’s your chance to meet and mingle with Brad Cohen, a nationally recognized educator, award-winning author, motivational speaker and subject of the Hallmark Hall of Fame movie Front of the Class.

Brad will host a fundraiser in the St. Louis area to benefit his foundation on Saturday evening, September 3 at Cardwell’s in Clayton. The event will feature a presentation by Brad, entertainment by magician Rick Silver, a silent auction, raffles, hors d’oeuvres and dessert stations. Space is limited, so be sure to reserve your tickets today.

More information is available here.

Research Opportunities

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Two TS-related studies are being conducted by doctors at the Washington University School of Medicine.

Dr. Kevin Black is conducting a study with children between the ages of five and 17 who are experiencing a recent (past six months) onset of “tics” — repetitive, involuntary sounds or movements such as eye blinking, sniffing, abdominal tensing, or making small noises.

    The purpose of this study is to compare children who go on to develop Tourette Syndrome (TS) with those who do not. It is the same study as the one Dr. Black initiated last year, with two changes: The study previously considered children ages five to 14 (now five to 17) and defined “recent onset” as occurring in the past three months (now six months).

    Requirements include four visits over approximately 12 months, questionnaires, assessments, interviews, genetic testing (saliva sample), and MRI scan. Compensation is available.

In the second study, Dr. Black teams with Dr. Bradley Schlaggar to look at the way the brain works in people with Tourette Syndrome using brain imaging.

    This study is limited to children eight to 17 years of age who have Tourette Syndrome (chronic motor and/or vocal tics) and are able to safely have an MRI (e.g., no metal implants or braces).

    Requirements include a screening visit lasting up to 6 hours and an MRI visit lasting about 2 hours. Volunteers will be compensated for their time and effort: $50 for the screening visit and $25 for the MRI scanning.

Parental permission is required for both studies. For more information, contact the studies coordinator, Mary, at 314-362-7651.

CDC Web Resource

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The National Center on Birth Defects and Developmental Disabilities (NCBDDD) at the U.S. Centers For Disease Control (CDC) offers some useful online information about Tourette Syndrome (TS), including information on some of the CDC’s work with TS in epidemiology and other areas.

Follow this link to learn more.

TS Awareness Month Call to Action

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Please review and act on this National TSA request today.

TSA, Psyadon to Collaborate on Drug Trial

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The national Tourette Syndrome Association (TSA) and Psyadon Pharmaceuticals have announced a clinical-trial collaboration to determine the potential efficacy of a novel drug, ecopipam, for managing the symptoms of Tourette Syndrome (TS).

“This is the first time in our 39-year history that TSA has collaborated with the pharmaceutical industry and helped to fund a clinical drug trial for the potential treatment of TS. It marks the beginning of a new phase in our efforts to facilitate the development of effective and safe medications that are urgently needed for people with TS,” said Judit Ungar, TSA President.

The TSA will also assist with recruitment for the clinical trial.

The FDA granted ecopipam an orphan-drug designation for the treatment of TS in September 2010. Richard Chipkin, President and CEO of Psyadon, said: “We are honored to be selected as the first company the TSA has collaborated with on a clinical drug study. Experiments in animals suggest that ecopipam, which belongs to a class of agents referred to as dopamine D1 antagonists, interacts with nerve cells and systems in the brain that are thought to contribute to the development of tics and other symptoms in TS. Based on these studies, there is a good rationale and a logical basis for examining this drug’s efficacy in reducing tic severity in individuals with TS.”

The clinical trial, which has already begun, is a Phase 2a, open-label, non-randomized trial to examine the ability of ecopipam to both reduce tic severity and also to determine its safety in individuals with TS who are 18 to 65 years old. The study, which is being conducted at four sites across the U.S. by leading experts in TS, is expected to last for several months. More information is available here.

Psyadon and TSA anticipate the data from this clinical trial will be released by mid-2012.