Tic Talk 2019 Symposium

TicTalk_2019_flyer

Please make plans to join us on April 29, 2019 at a very special event! Open to all those who have Tourette, families impacted, and professionals who are interested in learning more about Tourette Syndrome and tic disorders, this will be an amazing day. Please check out the flier for more information and register on-line at: https://sites.wustl.edu/tics/tic-talk-2019/

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.

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.

Congressio‚Äčnal 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.

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.

———————————————————

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.

Protecting Special-Needs Students

The Greater Missouri TSA is joining with other organizations to advocate for a change in state law that would prohibit the use of corporal punishment (spanking) on special needs students, including TS students.

This issue was brought to our attention by a Poplar Bluff family whose TS child was threatened with spanking in the sixth grade.

Missouri is one of the few remaining states that does not prohibit corporal punishment in its public schools. Instead, the state leaves the use of corporal punishment to the discretion of local school districts. However, the use of corporal punishment on special-needs students could have particularly damaging psychological effects and severely undermine educational progress for these students.

In addition to our organization, the Joshua Center for Neurological Disorders, Missouri NEA, Belle Center, and St. Louis Arc support this change in state law — and we are currently reaching out to other, similar organizations to ask for their support.

If you are affiliated with a special-needs advocacy organization, please ask them to join us in this effort. For more information, contact Missouri TSA Government Liaison Pete Abel.

Action Alert: Share Your Input

The National Tourette Syndrome Association (TSA) is looking for input on three topics:

    (1) Pending regulations for the Mental Health Parity Act
    (2) Application process for Social Security disability benefits
    (3) Genetic Information Nondiscrimination Act

Additional information is offered below the fold.

If you or someone you know wants to offer input on one or more of these topics, please send correspondence to Elridge Proctor at both her email address (elridge.proctor@tsa-usa.org) and primary fax number (202-408-3260).

Continue reading

Action Alert: Education Program Funding

For five years now, Congress has allocated approximately $2 million in annual funding for the Tourette Syndrome Public Health, Education and Research Program at the Centers for Disease Control and Prevention (CDC). Among other vital functions, this program enhances knowledge and understanding of Tourette Syndrome among educators, medical and allied professionals throughout the country.

With budget pressures mounting in Washington, we need your help to maintain funding for this program. Will you take 10 minutes or so out of your busy schedule today to make your voice heard? Visit this page to learn how.

Meeting with Elected Officials

Despite much progress in the last 20 to 30 years, there remains a substantial lack of awareness and understanding of Tourette Syndrome (TS).

The national Tourette Syndrome Association (TSA) and its Greater Missouri Chapter are working diligently to help close this knowledge gap. One such effort involves annual visits with members of Congress. During these visits, individuals with TS and their families can share their stories with the men and women who write our nation’s laws and establish funding for initiatives like the Tourette Syndrome Public Health, Education, and Research Program.

Last summer, five TS families, including three young men with TS, visited with Congressman Todd Akin at his District office in Ballwin, Mo. This spring, the Greater Missouri TSA is actively working to schedule local visits with Sens. Claire McCaskill and Kit Bond, as well as Reps. William Lacy Clay, Russ Carnahan, and their counterparts in the St. Louis Metro East area, Reps. Jerry Costello and John Shimkus.

If you are a constituent of any of these members of Congress, have a TS story to share, and would like to participate in the visits we are attempting to schedule, please contact Pete Abel — the government relations liaison for the TSA’s Greater Missouri Chapter — at 314-315-9346 or abel.reply@gmail.com.