Through May 8, if you shop online or in-person at any Barnes & Noble store for the book, Wishes for a Mother’s Heart — or any other items — a portion of the proceeds will benefit the national Tourette Syndrome Association. Remember to use ID number “10476034” when checking out and (online) click the box that says “Bookfair Order.”
April Meeting
Mothers, grandmothers, aunts, friends, and other members of the support-network for TS families are invited to just us for a “Girl’s Night Out” on Monday, April 25. It will be an informal evening of support and fellowship. Bring a dessert to share and coffee, tea, or soda.
We’ll gather 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. We hope to see you there.
Call to Action
Please consider contacting your Members of Congress this week, asking them to add their signatures to a “Dear Colleague Letter” in support of 2012 funding for Tourette Syndrome research and education.
The Children’s Health Act of 2000 was the first time Tourette Syndrome (TS) was mentioned by name in federal legislation. That legislation authorized a Public Health, Education and Research Program on TS at the U.S. Centers for Disease Control and Prevention (CDC).
Each year, the Tourette Syndrome Association must request an appropriation from Congress to continue this CDC program. The money goes toward raising public awareness about TS and training doctors and other allied professionals on how to recognize, diagnose, treat, and help people with TS. (Note: The funds for this program are an appropriation, NOT an earmark.)
It has taken decades of hard work to get to where we are now with awareness of TS. We cannot afford to lose momentum.
To take action, please consider the following options:
- Option #1: Call the U.S. Capitol Switchboard between 8 a.m. and 4 p.m. Central Time at 202-224-3121. Ask to be transferred, first, to your Representative, and then to your Senators. (Be sure to call both Senators from your state.) If you need help identifying your federal officials, please visit the relevant websites for the U.S. House and Senate.
Option #2: Write to your Members of Congress through the tools provided in the TSA Legislative Action Center.
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SAMPLE MESSAGE TO CONGRESS
After being transferred to the office of the relevant Member of Congress …
- Hello, I am calling as both a constituent and member of the national Tourette Syndrome Association. May I please speak with the Legislative Assistant in your office who is responsible for health issues?
After being connected with the appropriate Legislative Assistant, either live or by voice mail …
- Hello, my name is ________ and I’m calling about Tourette Syndrome.
Tourette Syndrome or TS is a complex, genetic, neurological disorder that is greatly misunderstood by the public and frequently mis-diagnosed by doctors because it is often accompanied by other disorders. I am very concerned about proposed cuts to U.S. health programs, in particular, the Tourette Syndrome Public Health, Education and Research Program at the CDC.
The support of Congress in funding this program for the past seven years has provided urgently needed training for doctors and other allied professionals on how to recognize, diagnose, treat, and help people with TS. Unfortunately, with no known cure, the challenges of living with TS are often so great that a long-term investment is needed in improving the lives of individuals who have TS.
As Congress moves forward with the budget for the federal government’s 2012 fiscal year, please keep my family and all individuals living with TS in mind.
Specifically, I hope your office will sign on to the “Dear Colleague Letter” that is circulating in support of the Tourette Syndrome program. For more information about that letter, you can contact …
In the House: Michael Grogan in Congresswoman Carolyn McCarthy’s office OR Jeffrey Last in Congressman Leonard Lance’s office
In the Senate: Ariel Simon in Senator Charles Schumer’s office.
Also, Elridge Proctor at the Tourette Syndrome Association can help answer any questions you might have. She can be reached at 202-408-7009.
Thank you for your consideration.
March Meeting
Join us at 7 p.m., Monday, March 28, to hear from a panel of experts about how you can help your TS child advance to the next stage of school and life.
The meeting will be held at our usual location, in the Gillis Board Room at St. John’s Mercy Medical Center, 615 S. New Ballas Road, St. Louis, MO 63141.
Topics will include the transition from elementary to middle school; from middle school to high school; and from high school to college. Our confirmed speakers are: Alice Hein and Mary Beth Graefe, both middle school counselors; JoAnn Noll, parent educator for the St. Louis County Special School District; and Lindi Mullins, access specialist for St. Louis Community Colleges.
Support James Durbin on American Idol
After auditioning and successfully making it past several rounds on “American Idol,” James Durbin is now a finalist on the highly popular TV singing competition.
The Santa Cruz rocker has wowed the judges with his passionate performances and wowed America even more with his personal story about living with Tourette Syndrome as well as Asperger’s.
James’ story has already created unprecedented national awareness of Tourette Syndrome. If he continues through to the top 10, to be announced March 24, he will be part of the highly popular nationwide tour, bringing him even more success and exposure and creating additional awareness of TS.
James’ next performance will be Wednesday, March 9, live on Fox, starting at 7 pm Central Time. For two hours immediately following the broadcast, viewers can vote for James in three different ways: by calling the toll-free number listed during the broadcast, by text message, and — for the first time this season — online. You can vote as often as you like by phone or text message; and up to 50 times online.
So don’t forget to tune in and watch James’ next performance and vote to help him advance to the next round.
February Meeting
At our February 28 meeting, we will be viewing videos of presentations from last year’s National Tourette Syndrome Association Conference. The topics include “Organization and Executive Function” and “Bullying.”
The meeting starts at 7:00 p.m. in the Gillis Board Room at St. John’s Mercy Medical Center, 615 S. New Ballas Road, St. Louis, MO 63141.
We hope to see you there.
New Medical Presentation Highlights
At the November 12, 2010, Tourette Syndrome Association (TSA) Annual Meeting in New York, Dr. Cathy Budman and Dr. Andrew Feigin made presentations on several topics, including an overview of Tourette Syndrome and tic disorders, an update on TS neuroimaging, and summaries of TSA research programs. A video of their presentations is now available at the TSA’s national website.
Thanks to Recent Contributors
In December, our chapter received two generous gifts, which we greatly appreciate and would like to acknowledge.
The family and friends of Evelyn Christmann, the great-grandmother of one of our TS kids, Joe Kasprzyk, donated $325. And Industrial Shelving Systems in Kirkwood provided a combined employer/employee donation of $375.
Thank you, to both, for supporting our efforts to help TS families in Missouri.
January Event
Our next event for TS children and their families will be held Sun., Jan. 16, from 2 to 4 p.m. on the lower level of Destiny Church (1809 Des Peres Road, St. Louis, MO 63131-1407).
St. Louis native Marc Elliott will spend time with our group. Marc was born with a rare disease that left him with virtually no intestines. Then, at age nine, he was diagnosed with Tourette Syndrome. He now inspires audiences across the country with his life story and words of advice on tolerance and perseverance in the face of adversity. Marc graduated from Washington University in St. Louis and now lives in Boston.
Pizza and beverages will be provided and our group will have access to the gym for shooting hoops and other activities.
This event is free of charge, however, please RSVP by Jan. 14 to Maureen Downey (modowney1@sbcglobal.net) with the number of people attending from your family.
Bullying Prevention
A resource page on strategies for preventing bullying at school is available on the TSA website. This page collects current resources and background information on the subject. Additional resources will be added as they are developed.
Greater Missouri TSA 