Youth Ambassador Training in San Antonio

TAA (National Tourette Association of America) has some exciting news to share about the Youth Ambassador Program. Like last year, TAA will be hosting a second Youth Ambassador Training from July 13-14, 2018 at the Grand Hyatt San Antonio in San Antonio, Texas. The CDC has again agreed to fund this second YA Training. We are also encouraging all teens that are qualified, to apply.

Applications are currently being accepted, please visit www.tourette.org/youth-ambassador.  The application deadline is June 1.

Training Requirements

•        Youth must be between the ages of 12 and 17.

•         A parent/ guardian must attend the training with the Youth Ambassador.

Costs

The CDC will cover the costs of the San Antonio YA training. The following are covered

•         Hotel accommodations for the night of Friday, July 13 for the YA team (additional nights at the team’s personal expense).

•         Transportation (e.g. airfare, train ticket, mileage reimbursement) up to $700 total per YA team (teen and parent/guardian).

•         Transportation to the Meet & Greet at The Cherrity Bar.

•         Training-sponsored meals for YA team.

•         Training program materials.

At attendee’s own expense (Costs NOT covered by the Tourette Association):

•         Hotel charges for any nights that are part of an extended stay.

Please feel free to reach out if you have any questions.

Natalie Joseph-Pauline

CDC Project Manager

natalie.pauline@tourette.org

718.224.2999, ext 227

www.tourette.org

 

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Tourette Syndrome Funding – FY19

Dear Chapter and Support Group Leaders & TAA Members-

It is the time to request support from your Members of Congress for the continued funding at the enacted level of the CDC Tourette Syndrome Public Health Education and Research Program.  This is in addition to any take action letters sent since it goes directly to the staff person who advises your Representative on which programs to support.  Chapter/Support group leaders should send emails to all of the below on behalf of their state chapter/support group.    Please also forward to your chapter/support group members and have everyone ask their family and friends to send emails!!!!  The below list is of key Members of Congress for us to contact in your state.

Individual TAA members should email their Representative’s staff.  If you do not know who your Representative is, please take a moment and go to www.house.govand enter your zip code in the top right corner to find your member.  Once you have your Representative, please find their name below and cut and paste the listed/corresponding draft email text Word Document into the body of an email, add the name of the staff to the top of the email, personalize the email with your/your family’s story about Tourette Syndrome, attach the Dear Colleague letter document titled “Tourette Syndrome Funding – FY19” and send the email to the staff email provided.  If they are not listed below, please go to https://www.tourette.org/public-policy/take-action/ to send a form letter.

For the following Members of Congress, cut and paste the text from  the attached Word document “Draft Email Dear Colleague” into your email, personalize (your story, staff name and staff email in to:), and remember to attach the “Tourette Syndrome Funding – FY19” document to the email and send to the below staff:

Rep. Ted Poe R-2-TX – Tim Tarpley – tim.tarpley@mail.house.gov

Rep. Kevin Brady R-8-TX  - John Porter – john.porter@mail.house.gov and Alycia.maloney@mail.house.gov

Rep. Al Green D-9-TX – Matthew Rowland – matthew.rowland@mail.house.gov

Rep. Randy Weber R-14-TX- Tom Harvey – tim.harvey@mail.house.gov

Rep. Bill Flores R-17-TX – Eric Gustafson – eric.gustafson@mail.house.gov and Christopher Taylor – Christopher.taylor@mail.house.gov

Rep. Jodey Arrington R-19-TX – Elissa McLerran – Elissa.mclerran@mail.house.gov

Rep. Lamar Smith R-21-TX – Abby Gunderson-Schwarz – ags@mail.house.gov

Rep. Pete Olson R-22-TX – Richard England – Richard.england@mail.house.gov

Rep. Michael Burgess R-26-TX – Edward Kim – Edward.kim2@mail.house.gov and Elizabeth Allen – Elizabeth.allen@mail.house.gov

Rep. Pete Sessions R-32-TX – Ron Donado – ron.donado@mail.house.gov

Rep. Marc Veasey D-33-TX – Nicole Varner – Nicole.varner@mail.house.gov

Rep. Lloyd Doggett D-35-TX – Afton Cissell – afton.cissell@mail.house.gov

Rep. Brian Babin R-36-TX – Ben Couhig – ben.couhig@mail.house.gov

For the following Appropriator Member of Congress, cut and paste the text from “Draft Email Appropriator...” into your email, personalize (your story, staff name and staff email in to:), and remember to attach the “Tourette Syndrome Funding – FY19” document to the email and send to the below staff:

Rep. John Culberson R-7-TX – Corey Inglee – corey.inglee@mail.house.gov and Hayden Jewett – hayden.jewett@mail.house.gov

Rep. Kay Granger R-12-TX – Suzi Plasencia – suzi.plasencia@mail.house.gov

Rep. Henry Cuellar D-28-TX – Juan Sanchez – juan.sanchez@mail.house.gov

If you have any questions, please do not hesitate to contact me.  We have received feedback from staff that these emails really make a difference and appreciate you taking the time to send them.

Best Regards,

Diana

Diana Felner

Vice President, Public Policy

Tourette Association of America

P.O. Box 75560

Washington, DC  20013

718.224.2999 ext 202

Mobile 703.966.5551

 

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CAMP APPLICATIONS CLOSING!

CAMP APPLICATIONS FOR BOYS: CLOSING TODAY, TUESDAY, 2/20!

If you are still waiting a form, please send anything else you have NOW. SCAN and email to TouretteTexas@aol.com or FAX to 281-238-0468.

If we have nothing from you by end of day, we CANNOT accept any new apps.

 

GIRL apps will also close soon, so please get your information IN!

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Camp du Ballon Rouge

Camp dBR will be held Friday, March 2 thru Sunday, March 4.  

Applications are NOW AVAILABLE for download on the Camp Page.  

Please complete the app in its entirety!  Be SURE to include/update your email address.

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Attend the 2018 TOURETTE GALA

The 2018 Tourette Association -  Texas Chapter Gala “Tiaras & Top Hats" will be held Thursday, January 25, 2018 at the beautiful Houston Country Club (#1 Potomac Drive).   Guests will be treated to an evening of reception, dinner, entertainment and live and silent auction.  

Chaired by Stacee and Michael Howse, the annual fundraising event this year honors Joanna and Brad Marks.  

Tables of Ten start at $2,000 and individual tickets start at $200.  For more information, contact Tourette Texas at TouretteTexas@aol.com  or 281-238-8096.

Pre-sales NOW in progress! THIS YEAR, WE NEED YOUR SUPPORT MORE THAN EVER, AS TEXAS TOURETTE FAMILIES RECOVER FROM HURRICANE HARVEY.  A donation of any size is most appreciated.

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CURRENT CLINICAL STUDIES

 Dr. Joseph Jankovic, Professor of Neurology and Director of the Movement Disorders Clinic at Baylor College of Medicine, and his team at Baylor are currently enrolling patients into two studies designed to improve tics and other symptoms associated with Tourette syndrome (TS).

1.      Valbenazine (also known as NBI-98854 and Ingrezza), already approved by the Food and Drug Administration (FDA) for the treatment of tardive dyskinesia, a condition caused by exposure to various drugs used for psychiatric and gastrointestinal disorders, may be beneficial in patients with TS. Patients, 6 to 17 years of age, with established diagnosis of TS may be able to participate in this placebo-controlled study.

2.         Deutetrabenazine (also known as SD-809 and Austedo), already approved by the FDA for the treatment of Huntington disease and tardive dyskinesia, is another drug studied at Baylor.  TS children, 6 to16 years old, with troublesome tics may be eligible to participate in this double-blind, placebo-controlled, trial.

  Once patients are enrolled in one of these clinical trials there is no cost to them for the drugs, visits or laboratory tests used to monitor the drugs.

"Double-blind, placebo controlled" trial simply means that some patients are randomly selected to receive the active (real) drug and others receive an inactive (placebo) drug.  Neither the patient nor the physician (investigator) will know to which group the patient was assigned (they are both "blind") until the study is completed.  The purpose for this scientific method is to prevent patients or their physicians to be biased about the effects of the drug (good or bad).  Once this phase of the study is completed patients can enroll in an "open-label" phase during which each receives the active drug.

All drugs currently on the market must undergo this type of a trial to be approved by the FDA.  In Europe, instead of using a placebo, the drug companies must select and appropriate a comparator (a drug that already has been approved for the studied condition).

Parents of children who are interested in participating should call 713-798-2273 to make an appointment for initial evaluation or contact Christine Hunter, RN (713-798-3951) or Ami Patel (713-798-6902) for further information.

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  The Tourette Association of America - Texas Chapter strongly supports research efforts to alleviate the symptoms of Tourette's and to ultimately find a cure.

  There is no cost for medication, doctor visits or lab tests with these two studies.

  Without such drug trials, we would not have the medications available so necessary for treatment.  However, in these studies your child may or may not receive the medication.  Those that do not (i.e., receive the placebo) will be on no medication to relieve the troublesome symptoms.  Neither the physician nor the patient knows which child receives medication (double-blind study).  

 

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