Action Alert: Missouri and the Congressional TS Caucus

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The national TSA has worked closely with members of the U.S. House of Representatives to establish a Bipartisan Congressional Caucus on Tourette Syndrome. Unfortunately, as of Aug. 15, members of the Missouri delegation had not yet joined this caucus.

Help us change that situation.

Please visit — and encourage your friends and family to visit — this Web page. There, the “Take Action” link provides an easy opportunity to edit and email a personalized message to your U.S. Representative and both U.S. Senators from Missouri, encouraging them to start a similar caucus in the Senate. Be sure to add a sentence or two about how TS is relevant to your family.

We appreciate your support.

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Aug. 17 Meeting for Teens, Young Adults

The first scheduled event for the newly formed group of Missouri teenagers and young adults with Tourette Syndrome will be from 2:00 to 4:30 p.m., Saturday, Aug. 17, at the St. Louis Zoo. Attendees will meet at the north entrance.

If you’re interested in participating, visit this Facebook group and ask to join, or send an email to Jackie Schechter at jspershing93@gmail.com.

New Book on Misophonia

Judith T. Krauthamer, vice chair of the Greater Washington TSA chapter, has written a new book on misophonia, a little known anger disorder.

Krauthamer notes that misophonia is “characterized by an anger/rage response to auditory stimuli, most prevalently chewing and eating sounds. Through time, triggers expand to include sounds such nail clipping, sniffing, and clearing one’s throat, and visual triggers such as leg-swinging and finger-pointing. The disorder is a developmental, neurological disorder, with an average age of onset in late childhood.”

She adds that “the neurobiology of this disorder has a great deal in common with Tourette [Syndrome],” although data indicate that only a small percentage of people with TS have misophonia and awareness of the disorder among the medical and therapeutic communities is limited.

Missouri TSA Teens and Young Adults Group

A group of Missouri teenagers and young adults with Tourette Syndrome are working to plan events in the St. Louis area, at which they can get together, share experiences, support each other, and generally, have some fun.

If you’re a Missouri teen or young adult with TS and would like to participate, visit this Facebook group and ask to join.

If you know a teen or young adult who might be interested, please pass along this information.

Finally, if you have questions, you can send an email to one of the group organizers, Jackie Schechter, at jspershing93@gmail.com.

Recommended Resource

The National TSA recommends this online resource for parents of children with disabilities.

Arranged by topic, in alphabetical order, the resource is easy to use and read, and it offers information on critical topics that might be otherwise difficult to understand, such as IDEA, the Individuals with Disabilities Education Act and IEPs or individualized education programs.

St. Louis-Area TSA Youth Ambassador

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The newest youth ambassador for the Greater Missouri Chapter of the Tourette Syndrome Association is Drew Guise, 14.

Drew was diagnosed with TS at eight years old, when he was in the third grade at Eureka Elementary in the Rockwood School District. During the first few years, his symptoms were relatively minor. Then, as adolescence progressed, those symptoms began to rapidly take control of his life. By the time he was in fifth grade, Drew needed major assistance during even the most common day-to-day activities. Over the next two years, With the help of doctors, counselors, and family, Drew was eventually able to manage most of his externally visible symptoms. In April 2011, he travelled to Washington D.C. to participate in youth ambassador training.

Since then, Drew has spoken to both students and adults in a variety of settings, from classrooms to large-group venues. His presentation is a blend of factual information and personal anecdotes about his journey with TS over the years. Drew can speak to a number of topics including bullying, acceptance, and awareness of those around you.

To schedule Drew for a speaking engagement, call 636-938-3858 or send an email to stlguises@yahoo.com. Drew is accompanied by a parent or adult guardian to all events.

Follow this link to listen to a recent St. Louis-area radio interview, featuring Drew and his father, Marty.

March Event: 2013 Spring Conference

Please join us for our 2013 Spring Conference, from 9 a.m. to 1 p.m., on Saturday, March 23 at the Drury Inn Conference Center, 11980 Olive Blvd, Creve Coeur, MO 63141.

We’ll provide a free continental breakfast, and you’ll have an opportunity to meet some inspiring individuals, including:

  • Jonathan Friesen, award-winning author of Jerk, California; The Last Martin, and Aldo’s Fantastical Movie Palace
  • Drew Guise, our chapter’s newest youth ambassador.

Parent, teachers, and students are welcome.

We hope to see you on March 23.

Congressio​nal Caucus on Tourette Syndrome

The National Tourette Syndrome Association is calling on the 113th Congress to establish a bipartisan caucus on Tourette Syndrome (TS).

For nearly 10 years, the Public Health Education and Research Program at the Centers for Disease Control and Prevention (CDC) has become a cornerstone of TSA’s comprehensive approach to improving the lives of children and adults affected by TS. A Congressional Caucus would help ensure the continuation of this vital program.

We hope all individuals affected by TS will contact their Representatives and encourage them to co-sponsor this caucus. For more information, please call or email Elridge Proctor, TSA’s Vice President of Public Policy, at 202-408-7009 or elridge.proctor@tsa-usa.org.

November Event

We hope you’ll join us on Monday, Nov. 5, for an evening of fun and fellowship with St. Louis native Marc Elliott, who has TS and inspires audiences across the country with his life story and words of advice on tolerance and perseverance in the face of adversity.

We’ll gather from 6 to 8 p.m. at Destiny Church, 1809 Des Peres Road, St. Louis, MO 63131. Enter through the back of the church, from the lower, rear parking lot.

Pizza and soda will be provided, along with teacher and parent information packets. We will also be selling copies of the brand new Family Guide to Tourette Syndrome, published by TSA National, for a special discounted price of only $10.

We hope to see you there; no RSVP necessary.

Producers Seeking Stories of Adults with TS

For a documentary series currently in development, Vintage South Productions is searching  for adults who are willing to share their experiences living with Tourette Syndrome (TS). 

If you or someone you know can respond “yes” to any of the following questions, Vintage South would like to hear the story:

  • Does your profession surprise people when they learn you have TS?
  • Are motor and/or verbal tics a part of your everyday life?
  • Have you and your family or co-workers learned different techniques to accommodate your TS?

Visit this site to contact Vintage South.