Don’t Miss This April 5 Opportunity

MBHimle2

 

We hope you’ll join us, the morning of April 5, to hear nationally recognized Tourette Syndrome expert Dr. Michael Himle, pictured above. He will share information on TS research and the newest behavioral therapies, including Comprehensive Behavioral Intervention for Tics (CBIT).

The meeting starts at 9 a.m. at the Drury Inn & Suites, 11980 Olive Blvd., Creve Coeur, MO 63141.

Please print and share this flier with anyone whom you think might be interested in attending.  And please remember to RSVP to lmchd52@gmail.com.

Advertisements

March 6 Kansas City Support Group Meeting

The first Tourette Syndrome Association support group meeting in the Kansas City area is scheduled for March 6. The meeting will start with a 30-minute presentation by TSA Youth Ambassador Jaren Zimmermann. Details follow.

Diagnosed with TS when he was 11 years old, Jaren attended a “Trip to the Hill” event with the Tourette Syndrome Association in Spring 2013, visiting members of the Missouri Congressional delegation. While in DC, Jaren was trained in the Youth Ambassador presentation on TS awareness and bullying.

Following Jaren’s presentation on March 6, there will be a meet-and-greet time for all attendees.

    MEETING DETAILS
    March 6, 2014
    6:30PM – 8:00PM
    Community Room
    Children’s Mercy Northland
    501 NW Barry Road
    Kansas City, MO 64155

Questions or comments can be emailed to either dzimm1224@gmail.com OR jarenzimmermann.ya.tsa@gmail.com.

Action Alert: TS Caucus Update

Last month, we asked you to write your Members of Congress and encourage them to join the new Congressional Caucus on TS. We’re now asking that you write again, this time encouraging the same officials to send someone from their staff to a planned Congressional briefing session about TS on Sept. 17.

Here’s a link to assist you with making this request.

As always, we encourage you to re-phrase the template letter (available through the page linked above) in your own words.

October Back-to-School Event

From 7 to 8:30 p.m. on Thursday, October 3, our chapter plans to host a combined event for parents, teachers, and kids at Destiny Church, 1809 Des Peres Road, St. Louis, MO 63131 (near I-270 & Manchester Road).

Please park in the lower lot and use the back entrance of the church complex.

Our featured speaker for parents and teachers will be resource special educator Jullie Jacob, a recent SSD/Affton Teacher of the Year. Julie will offer information on a number of topics, including tips for (a) helping TS kids get organized and handle homework, (b) working with a child’s classroom teacher, (c) managing IEP meetings … and more.

Please feel free to invite your child’s teacher to this event. Informational packets will be available.

In addition, during Jullie’s presentation, we will be offering a game night for your children, so they can have some fun and social time, too.

We hope to see everyone there.

Action Alert: Missouri and the Congressional TS Caucus

WashingtonDC

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.

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

Drew Guise alt edited

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.