Take a minute to help students and adults who have Tourette Syndrome!

Please take 3-4 minutes and help students and adults who have Tourette Syndrome.  By clicking the links below, you will be provided with an easy, and quick method to automatically send an important email to your representations regarding education issues and funding for TS research. Additionally, this will result in awareness that TS is an important disorder that impacts thousands of their constituents and which requires their continued support.  Following are brief summaries and links.

Ø  Education 

  1. Students who are bright and have diagnoses that interfere with their education are being denied necessary services.
  2. Manifestation Determination protection MUST NOT be removed from IDEA. This protects students with disabilities from being suspended for symptoms. For additional information regarding protections provided by manifestation determination, read Letter of the Month that is at the top of TS website Education Page. http://tsa-usa.org/Education/education_main.htm
  3. Require that College Education Majors and teachers who are re-certifying receive information regarding TS

http://cqrcengage.com/tsa/app/write-a-letter?11&engagementId=123893

 

Ø  Include TS in Research   

Tourette Association has an opportunity to be included in a bill regarding funding for research of neurological disorders.http://cqrcengage.com/tsa/app/write-a-letter?11&engagementId=123893

Thank you in advance.

Kansas City Event: Where Can I Go To Find Support for My Child With Special Needs?

Tuesday May 5thWhere Can I Go To Find Support for My Child With Special Needs?
Cure’ of Ars in our school library (9403 Mission Rd., Leawood, KS 66206​ at 7pm.  
Presenters: TASN (Tertiary Autism Support Network), DSGKC (Down Syndrome Guild of Kansas City), ADHDKC (ADHD Kansas City Branch), WSA (Williams Syndrome Association), BIAKS (Brain Injury Association of Kansas and Greater Kansas City), 5p- Society Cri-du-Chat (Chromosomal Conditions Support Group), GMTSA (Greater Missouri Tourette Syndrome Association), KAD (Kansas Association for the Deaf), KAB (Kansas City Association for the Blind), KIRC (Kansas Instructional Resource Center for the Blind and Visually Impaired), BIS (Brain Injury Support Group) and CAS  
The open house will be from 7pm to 8pm and will ​include light appetizers, wine, and other refreshments. The open ​house is open ​to any parent in our school and surrounding schools.

Upcoming event: Ask the Doctor/ Ask the Teacher

When: Thursday April 9th, 2015 @ 7:00pm

Where:  Destiny Church (basement rear enterance)  1809 Des Peres Road, St. Louis, 63131

Panel members/ guest speakers:

Washington University Movement Disorders clinic specialists: Dr. Kevin Black & Dr. Sheel Pathak, Neurologist. The doctors are leading neurologists in the area with extensive TS experience. They are knowledgeable in the current treatments, therapies, and medications for children and families.

Patti Dean, Special School District for the Rockwood district. As an SSD teacher, Patti can address questions related to the best ways to help your children and work with teachers.

FREE TOURETTE SYNDROME WRISTBANDS FOR ALL ATTENDEES!! 

We look forward to seeing you there!

 

New Tics Study: Do you have a child with a recent onset of tics?

A Washington University research study seeks participants! 

A TS-related study is being conducted by doctors at the Washington University School of Medicine.

Dr. Kevin Black is conducting a study with children between the ages of five and 12 who are experiencing a recent onset (within the past six months) of “tics” — repetitive, involuntary sounds or movements such as eye blinking, sniffing, abdominal tensing, or making small noises.

The purpose of this study is to compare children who go on to develop Tourette Syndrome (TS) with those who do not. The study considers children ages five to 12 and defines “recent onset” as occurring within the past six months.

Requirements include three visits over approximately 12 months, questionnaires, assessments, interviews, genetic testing (saliva sample), and MRI scans. Volunteers will be compensated up to $310 for time and effort.

Parental permission is required. For more information, contact the study coordinator, Emily, at 314-362-2083 or bihune@npg.wustl.edu.

 

NJCTS Tim Howard Leadership Academy at Rutgers University

Calling all teens with TS entering grades 9 through 12: Apply today to attend the NJCTS Tim Howard Leadership Academy at Rutgers University August 69, 2015.  Take advantage of this opportunity to interact with doctors and experts in TS and associated disorders, to gain an improved sense of yourself as a leader and advocate, and to engage in a variety of unforgettable social activities with other teens diagnosed with TS.  Visit theNJCTS Tim Howard Leadership Academy website for more information and to access the online application!

Here’s what some of last year’s attendees had to say about their experience at the Academy:

“The academy has helped me realize that my voice and opinion matter and that I shouldn’t be afraid to share it. I know that I am strong, resilient, and a self-leader. I’ve made so many friends who helped to teach me these things as well.”

“I understand so much more about the brain and how it works, as well as Tourette’s. I acquired new skills that will help me through my life, like organizing myself and how to advocate.”

“This was the safest and most accepting place I have ever been in. We got to know each other well enough that we were able to safely and respectfully joke with one another.”

If you have questions about the Academy or the application process, call us today at 908-575-7350. Don’t miss out on this truly spectacular opportunity!

RSVP Deadline Extended: Susan Conners Event

The deadline to RSVP for the Susan Conners event has been extended to Nov. 6th, so if you have not sent in your RSVP yet, you still have time! Please be sure to RSVP to Lynn Dunlap at Lmchd52@gmail.com.

Here is more information about the event:

On Saturday, Nov.8th – Susan Conners, retired middle school teacher w/TS, and nationally acclaimed speaker/author, will present Tourette Syndrome and Associated Disorders in the Classroom. She will feature her newest book, The Tourette Syndrome & OCD Checklist: A Practical Reference for Parents and Teachers and present.

Copies of the books, as well Tourette Syndrome wristbands and medical ID cards will be available. Children are welcome. Attendance is Free. RSVP to Lynn Dunlap at Lmchd52@gmail.com by November 1st. For more Information, please see the attached flyer:https://missouritsa.files.wordpress.com/2014/10/missouri-flyer-11-8-14.pdf

Upcoming Event: Susan Conners, Nov. 8th

On Saturday, Nov.8th – Susan Conners, retired middle school teacher w/TS, and nationally acclaimed speaker/author, will present Tourette Syndrome and Associated Disorders in the Classroom. She will feature her newest book, The Tourette Syndrome & OCD Checklist: A Practical Reference for Parents and Teachers and present. Copies of the books, as well Tourette Syndrome wristbands and medical ID cards will be available. Children are welcome. Attendance is Free. RSVP to Lynn Dunlap at Lmchd52@gmail.com by November 1st.

For more information please see the attached flyer: Missouri Flyer 11-8-14

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Schedule of Meetings/Events for 2014-2015

Thurs., Sept. 25th – Back-to-School Night 7-9p.m. Destiny Church (basement gym, around back of building) 1809 Des Peres Rd(off Manchester & 270). Jen Stenger, Ill. teacher w/TS and author of The Life That Chose Us, describing life as a teacher with TS. Handouts pertaining to the start of the school year will be available. Children are welcome. Please feel free to invite your child’s teacher.

Sat., Nov.8th – Drury Inn(Olive & 270) 9a.m.-12p.m., breakfast provided. Susan Conners, retired middle school teacher w/TS, and nationally acclaimed speaker/author, will feature her newest book, The Tourette Syndrome & OCD Checklist: A Practical Reference for Parents and Teachers. Copies of the books, as well Tourette Syndrome wristbands and medical ID cards will be available. Children are welcome. Attendance is Free. RSVP to Lynn Dunlap at Lmchd52@gmail.com by November 1st.

February – Children’s Activity To Be Determined, and announced at a later date. If you are interested in such an activity and have suggestions as to what you might like, please email us about that.

April – Date to be announced(Thursday night),7-9 p.m. “Ask the Dr./Pharmacist/Teacher” Panel. Destiny Church

Voice Your Support!

Voice Your Support!

On Wednesday, August 20, 2014 (9-5 Est) Give a Collective and Powerful Voice to the Collaborative Academic Research Efforts for Tourette Syndrome Act (H.R. 4221/S.637).

H.R. 4221 / S. 637, also known as the CARE Act continues to gain momentum in Congress. Senator Charles Schumer, the third-ranking Senate Democrat and Chairman of the Senate Rules Committee recently became a cosponsor in order to show support for his constituents living with Tourette Syndrome. His support, plus the addition of 16 Congressmen as cosponsors as of the end of July are a sign of the growing support for TS research on Capitol Hill.

The CARE Act would:
Expand, intensify, and coordinate the National Institute of Health (NIH) programs and activities regarding scientific research on Tourette Syndrome.
Establish 4-6 Collaborative TS Research Centers.
Collect data on the prevalence, and impact of Tourette Syndrome in the US and the availability of medical and social services for individuals and families with Tourette Syndrome
Co-Sponsorship of H.R. 4221 / S. 637 is a crucial step in passing this bill into law.
Talk Now With Your US Congress Representatives, and let us know how it went! Email: elridge.proctor@tsa-usa.org

CALL ACTION ALERT:
On Wednesday, August 20th Call your US House Representatives and US Senators to voice your support. Enlist the help of your friends and family. Ask them to reach out to their elected officials to communicate how important support for the CARE Act is to you.
Log onto TSA’s Public Policy Action Center between 9 am and 5pm EST to be connected to your US House Representative and Senators.
http://cqrcengage.com/tsa/app/make-a-call?19&engagementId=56376

Call Message:
Hello, my name is (give your name) and I am calling from (City and State). Is your Healthcare Legislative Assistant available?
(Wait to be transferred. If not, continue with message.)
I would like to ask my (Representative/Senator) to Co-sponsor HR. 4221 / S. 637, the Collaborative Research Efforts for Tourette Syndrome (CARE) Act. This bill is critical for research into finding a cure for Tourette Syndrome to help individuals like me and all Americans living with Tourette Syndrome.
Thank you for relaying my message. End Call!

TV Alert! 20/20 Tomorrow Night!

Tune in tomorrow, Friday, August 15 at 10:00 pm EST on ABC for “20/20” which will focus on successful individuals in sports and the arts who have Tourette Syndrome.

Featured will be actor and National Tourette Syndrome Ambassador Dash Mihok; Olympic swimmer Anthony Ervin and TSA Youth Ambassador Isabella. In addition, Dr. Jonathan Mink, from the University of Rochester, and the co-chair of TSA’s Scientific Advisory Board, will talk about the science behind TS and if it actually does help athletes perform better.

You can read more on the “20/20” website here – http://abcnews.go.com/Health/tourette-syndrome-make-superior-athlete/story?id=24977715 – and tune in tomorrow night to watch the full show!