TS Documentary on PBS

“Different is the New Normal” — a documentary that demystifies Tourette Syndrome — will be airing nationally on local PBS stations over the next several weeks, in honor of Tourette Syndrome Awareness Month (May 15-June 15).

Visit this site — then click on the “Schedule” tab at the bottom — to see if your local PBS station is airing the documentary. If it’s not, consider contacting the station and asking them to air it.

For additional information about the documentary, which chronicles the life of Ariel Small, a 16-year-old boy with Tourette Syndrome, visit the TSA website.

In Search of the Genetic Origins of TS

The Tourette Syndrome Association International Consortium for Genetics (TSAICG) is working together with the National Institutes of Health (NIH) to find the genes involved in the development of TS.

Over 1,900 people with TS have joined the study, so far, but researchers are still looking for another 300 participants.

If you or a family member is interested, please consider the following information.

The study is seeking adults (ages 18 and older) and youth (ages 6 to 17) who have a diagnosis of TS from a doctor.

To begin the study, adults with TS will fill out a questionnaire about their tics and related symptoms. For youth with TS, a parent will be required to fill out the questionnaire for (or with) their child. The questionnaire can be completed online or over the phone. To start the questionnaire, please visit this website. The questionnaire takes about 20 minutes to complete online.

Answers to the questionnaire will be reviewed by the research team to determine if each participant with TS qualifies for the second part of the study, which involves giving a blood sample used for genetic analysis. Only one eligible family member with a TS diagnosis can provide a blood sample. Individuals with TS can participate in this study only one time. Some participants will also be selected to take part in a longer, optional interview.

To learn more about the study, visit this site or call: 1-877-883-9350 (1-TS STUDY E 50) on the East Coast, and 1-877-883-9950 (1-TS STUDY W 50) on the West Coast.

June Event

Bring your entire family and join the Greater Missouri TSA chapter from Noon to 2 p.m. on Saturday, June 16, at the Family Golf and Learning Center, 3717 Tree Court Industrial Blvd., off Marshall Rd., in Valley Park, Mo.

The event will feature free miniature golf, free food (hot dog, chips, and soft drink), and a free bucket of golf balls for the driving range. You’ll also have an opportunity to speak with Craig Story, a professional golf instructor who has TS. (Note: We last visited the Center and Craig in May 2009.)

Please send an RSVP email to: lmchd52@gmail.com.

We look forward to seeing you.

TS Video Program Available Online

Several thousand people have already requested free copies of the two-disk TSA video education program, “Tourette Syndrome in the Classroom, School, and Community.”

You can now watch the entire program online.

The content is designed to inform teachers, medical professionals, social workers, and others about TS, including ways to recognize and help those who have it.

An accompanying slideshow (in PDF) is available to download and print.

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

You can also obtain a physical copy of the DVDs by completing this online form.

There is no charge for this resource. Preference is given to TSA members. Orders limited to one per person, while supplies last.

April Event

In response to popular demand, our chapter will host a second “Teen Pizza Night” on Saturday, April 21, from 6:00 to 8:00 p.m., at JJ Twiggs Pizza, 2964 Dougherty Ferry, Kirkwood, Mo.

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.

RSVP to Lynn Dunlap, by April 14, at either 314-984-9019 or lmchd52@gmail.com.

March Event

On Sunday, March 25, from 2:30 to 4:30 p.m., our chapter will sponsor two hours of bowling (including shoes and one beverage per child) at Brunswick Bowling, 1254 Dougherty Ferry Road, Valley Park, Mo.

RSVP to Diana Guise, by March 9, at either 636-938-3858 or stlguises@yahoo.com.

Feb. 9 Meet and Greet with Marc Elliot

 

 

Please join us for a special appearance by Marc Elliot on Thursday, Feb. 9, from 7 to 9 p.m., in Room 201a/b at the Kirkwood (Mo.) Community Center (111 South Geyer Road).

Marc has overcome a number of challenges. He was born with a rare digestive disease that left him with virtually no intestines. Then, at age nine, he developed Tourette’s Syndrome. Now twenty-six, Marc inspires audiences across the country with his life story, illustrating the importance of tolerance and appreciating others for their unique gifts. He is also the author of a brand new book, What Makes you Tic? (Marc will gladly sign copies. Bring your own or purchase one at the event for $15.)

This event is a great opportunity for TS kids, families, and educators to meet Marc and learn from his experience.

Light refreshments will be served.

Please contact Lynn Dunlap with questions: lmchd52@gmail.com.

Conference Scholarships Available

Funds have been established by TSA Board Members to assist those who wish to attend the TSA 40th Anniversary National Conference to be held at the Hyatt Regency Crystal City in Arlington, Va., in April.

Scholarship awards will be (a) based on need, (b) determined by the Conference Scholarship Committee, and (c) cover conference registration fees only; travel and hotel expenses will remain the responsibility of the award recipients.

Applications should be submitted as early as possible and no later than Friday, January 27, 2012, via one of the following methods:

  • Mail: TSA, 42-40 Bell Boulevard, Suite 205, Bayside, NY 11361
  • Email: sandra.holland@tsa-usa.org
  • Fax: 718-279-9596

Awards will be announced by Friday, February 10, 2012.  All decisions of the Committee are final. 

Application Links

For more information, please contact Michelle Gutmann at 718-224-2999, ext. 258, or Michelle.Gutmann@tsa-usa.org.

Iowa TS Conference

The Iowa TSA Support Group is holding a regional conference on Saturday, March 31 in Cedar Rapids, with special guest Susan Conners.Ms. Conners has more than 30 years of experience in education and more than 25 years of experience working with children with TS, OCD, and associated disorders. She has presented workshops on TS in 48 states, four countries and two languages. Her past work includes publishing brochures, producing videos, and developing curricula on TS and education subjects. She and a anumber of her family members have TS.

At the March 31 conference, she will discuss topics ranging from classroom strategies and accommodations to behavioral issues and functional behavioral assessments for TS children.

This event is sponsored by the Brad Cohen Tourette Foundation. There is no registration fee; the confernce is free to parents, educators, and medical professionals interested in learning more about TS. A limited number of reduced-rate hotel rooms are availble on a first-come, first-served basis. For more information, email: lisa@itsasupportgroup.org.

Tourette Syndrome Camp Organization

The Tourette Syndrome Camp Organization will be hosting a children’s program during the Tourette Syndrome Association National Conference on Friday, April 20, and Saturday, April 21, 2012, in Alexandria, Virginia.

The same organization will host its 19th Annual Tourette Syndrome Camp USA from Sunday, June 24, until Saturday, June 30, 2012, at YMCA Camp Duncan in Ingleside, Illinois.

For more information, including registration forms, follow this link for the National Conference program, and this link for the summer camp.