Winter 2015

Volume 10, Issue 1

 

BONNE NOUVELLE

Your "Good News" from TouretteTexas

Helping Children and Changing Lives 

Tourette's is a chronic neurobehavioral movement disorder that begins in childhood.  Those affected make motor movements and vocalizations they cannot control.  Additionally, many have associated obsessive compulsive disorder, attention deficit hyperactivity disorder, dysgraphia and other issues.  Today's estimates indicate up to 3 percent (1 in 33) of all children may have Tourette's.  In spite of its high incidence, Tourette's continues to be greatly misunderstood.  Although medication may help control the symptoms, as of yet there is no cure.  Tourette Texas, one of the largest Chapters of the Tourette Association of America, is a 501(c)(3) non-profit organization.  We directly assist Texas area families and children in crisis, 24 hours a day, 365 days a year. 

From the President - Michael Conway

MichaelConway
Michael Conway
Happy New Year to all the families we serve in Texas!  My hope for the New Year is that each of us, affected in some way by Tourette Syndrome, becomes more active in our 'battle' against this disorder.  The only way you and I, who aren't in the medical field, is to take action and become responsible by educating others (i.e., neighbors, teachers, basically, anyone you interact with), getting involved with your local support group, or starting a fundraiser to support the free programs we provide to you. 

The majority of our events and programs are listed in the quarterly newsletter, but please access our website to obtain additional information.  The next few months will be our busiest, and most exciting, time of year.  Our annual Gala, Stars at Night, Big and Bright - honoring Texas children with Tourette's Syndrome, is occurring January 28.  Camp du Ballon Rouge, in its 14th year, will be held March 4-6.  This event will fill quickly - please be sure to access/complete the forms on our website if you are interested in sending your child to camp.  Targets for Tourette, our annual Sporting Clay Shoot, which includes an evening dinner, great entertainment, and an auction, is happening on April 15.

Our organization receives numerous requests throughout the year from families who are 'lost' and do not know what to do when their child has been diagnosed with Tourette.  I often think of what would happen if the Tourette Association - Texas Chapter ceased to exist.  Who will be available to provide hope and support, referrals, and the many programs our organization provides?

Please re-read my first paragraph.

Had you decided, after you initially read the first paragraph, you were going to put more effort into this battle?

Tourette Syndrome is rare - in comparison to cancer, diabetes, and many other diseases/disorders.  For this reason, raising funds and providing free programs, as well as providing regular support groups is often a challenge.  This year, I hope you will put more effort into our battle against TS - I would like to stop thinking about the scenario of our organization not being here to help! 

Please contact us if you would like to share any ideas with us or become more involved with our organization.

I look forward to seeing every one of you at one of our events.

Michael  
Join our Mailing List!
In This Issue
From the President
Gala Fundraiser
Camp du Ballon Rouge
Center of Excellence
Targets for Tourette
Spotlight on Austin
Photo Gallery
Website, Facebook, Twitter
Shop & Support!
Physician Referral List
How Can Tourette Texas Help You?
How Can You Help Tourette Texas?

Texas Hotlines

Houston:  281-238-8096

Toll Free:  866-894-8686
Emergency Pager: 281-932-0632

Quick Links

Follow us on Twitter

Find us on Facebook

Support Groups

Tourette Gala Fundraiser - Stars at Night, Big & Bright

  

Download a complete invitation HERE.

To reserve your tickets or to make a donation of any size, 
visit the Gala 2016 Event page HERE.

Camp du Ballon Rouge
Our 14th Annual Camp du Ballon Rouge will be held Friday, March 4 through Sunday, March 6, 2016, at Camp For All.  Activities for our campers begin with a campfire on Friday evening and conclude with the always emotional Red Balloon Ceremony on Sunday morning, which parents are invited to attend.  
 
Applications for Camp dBR 2016 for ages 6 thru 18 are now available to download HERE.  

DBR.Logo

"To enrich the lives of children diagnosed with Tourette's syndrome, through a unique outdoor experience that offers acceptance, provides hope, promotes discovery, and creates the opportunity to establish relationships with others affected by TS" - that's our mission! 
 


There is a separate application process for Counselors-In-Training (CITs) and Junior Counselors and Counselors.  
CITs must be age 19; Junior Counselors are age 20.  Ages 21 and up are eligible to be considered for Counselor.  Acceptances for CIT, Jr. Counselor or Counselor are all contingent on a separate Application and Selection process.  Please email [email protected] to request that application.  When emailing, please provide your child's name, age and previous camping experience.


Help Sponsor a Child at Camp du Ballon Rouge!

Du Ballon Rouge is the only program of its kind in the country, where Texas children with Tourette's can attend with no tuition cost to the family.  The facilities, counselors, nursing staff, physicians, meals, activities and crafts are all provided  by Tourette Texas - at a cost of around $350 per child for the weekend - and  made possible by donations
 
Your tax deductible donation can help us send a happy child to camp. 
Please purchase a "virtual red balloon" for only $100.00 to help us continue the magic!
 
To purchase a virtual balloon and help send a child to camp, CLICK HERE  or PRINT THIS FORM.
Center of Excellence
Joseph Jankovic_ M.D.
The national Tourette Association of 
America recently designated the Baylor College of Medicine Parkinson's Disease Center and Movement Disorders Clinic, founded and director by Joseph Jankovic, MD, Professor of Neurology Distinguished Chair in Movement Disorders, as the Center of Excellence (COE).  The TAA-COE designation is an important honor acknowledging the high standard of care, research, education/awareness, and outreach/advocacy provided by the Baylor team. The TAA-COE is located in a new facility in the east side of the Texas Medical Center, Baylor St. Luke's Medical Center at the McNair Campus, 7200 Cambridge, 9th Floor, Suite 9A  www.jankovic.org 


In addition to providing the most expert and compassionate care to patients with TS and their families, the Baylor TAA-COE is involved in many training and research endeavors.  To make an appointment for initial evaluation, call the PDCMDC at 713-798-2273 or to obtain additional information regarding research studies, please contact Christine Hunter, RN, BSN at (713) 798-3951 or by e-mail at [email protected]. For further information about clinical, research and educational activities, also visit this website: www.jankovic.org.


Targets for Tourette's Clay Shoot & Dinner
Spotlight on Austin - Kate & Edward Knapek
 
Edward & Kate Knapek
Edward Knapek,
who has Tourette's, presented an anti-bulling/acceptance of others speech for the 6th-8th graders at St. Helen Catholic School. The principal and teachers were so impressed that they had the students write essays about what his talk meant to them. Here are some of the quotes from the children. 


Edward and his wife Kate are co-Leaders of the Tourette Texas Austin Support Group.  In addition to being Coach at his school, Edward is the District Coordinator for Private School Sports Leagues in his area. Kate.....

Learn more about the Austin Support Group HERE.
Photo Gallery
October 19: Takeaway Tourette











November 2: 21st Annual Tee-Off for Tourette

Tee-Off 2015Tee-Off 2015 Tee-Off 2015
Tee-Off 2015

Tee-Off 2015
Tee-Off 2015 

Michael Conway -- Ironman: TRI for TOURETTE'S


November 20 --Austin Area Day of Service

Students at Hudson Bend Middle School coordinated by parent Stacey Vaughn, hosted an off-campus Day of Service on Friday, November 20th from 10AM to 12PM Students aged 12 to 14 years old held a Text-A-Thon for Tourette's awareness for the state & the local Austin Support Group.  Great job, everyone! 


  
 

Support Group Parties
  
    

Holiday Tree - Houston Museum of Natural Science
 
Visit Our NEW Website!

www.TouretteTexas.org

The url may be the same, but we hope you will find the pages easier to navigate and information more plentiful.  Check out our LIBRARY of information, see when the next SUPPORT GROUP meeting is in your area, stay current on coming EVENTS.  

 

https://www.facebook.com/TouretteTexas

You can also stay up-to-date at our Facebook page!

 

@Tourette_Texas

We are starting to tweet!  Be sure to follow us. 


Support Tourette Texas While You Shop!

Who knew there were so many ways to financially support TouretteTexas 

WITHOUT SPENDING ANY EXTRA MONEY?

 

 AmazonSmile is a simple and automatic way for you to support the Tourette Syndrome Association - Texas every time you shop, at no cost to you. When you shop at smile.amazon.com, Amazon will donate a portion (0.5%) of the purchase price to Tourette Texas! To shop at AmazonSmile simply click here on your computer or mobile device. You may also want to add a bookmark to AmazonSmile to make it even easier to return and start your shopping at AmazonSmile.  

http://smile.amazon.com/ch/74-2198940


 

Support Tourette Texas through iGive.com. The easiest way is to install the iGive Button, it automatically makes sure that any purchase you make at any of the 1,000+ iGive merchants helps us with a donation. FREE you, donations for US!

Install the iGive Button now: http://www.iGive.com/button

 

 

 If you purchase groceries at Randalls, Tom Thumb or Kroger,

you can help Tourette Texas every time you shop!

Randalls.TomThumb

At Randalls or Tom Thumb, ask the cashier or Courtesy Booth to link your Rewards Card and future purchases to Tourette Syndrome of Association of Texas at  #2493.  That's it!  Our number stays linked to your card unless you cancel it.  

 

 

Shop at Kroger with your Kroger Plus Card!  

Link your Kroger Plus Card to Tourette Association of Texas NPO #82092 starting August 1, 2015, and every time you purchase at Kroger, a percentage will go to the Kroger Community Rewards Fund, and a portion of the proceeds will be donated to Tourette Texas! 

RE-ENROLL each year starting in August - required by Kroger.
 

All supporters must have a registered Kroger Plus Card account online to be able to link their card to an organization. 

Do you use your phone number at the register? Call 800-576-4377 and select option 4 to get your Plus Card number. 

Register online at www.KrogerCommunityRewards.com.  If you are a new online customer, click on SIGN UP TODAY to register.
 

If you have problems signing in or creating an account please call Kroger Online Account Customer Service: 1-866-221-4141 or email [email protected] for more information. 

 

These are incredibly easy ways to support Tourette Texas!  

Ask you family and friends to participate also.  There is NO COST to you to do this 

and we truly appreciate every penny we receive!

Physician Referral List

Tourette Texas maintains a list of Texas physicians who are experienced with TS.  To receive a PRL for your area, please email [email protected] with your city location.  We are also seeking to expand our list, particularly in smaller cities, so if you have a physician who does a great job dealing with TS, please email us his or her contact information.  PHYSICIANS:  if you are interested in learning more about TS or being considered for our PRL, please contact Sheryl Kadmon, Executive Director, at 281-238-8096 or 866-896-8484.

How Can Tourette Texas Help You?

Tourette Texas is here to assist families dealing with TS throughout the state.  We offer:

  • EDUCATIONAL PRESENTATIONS for physicians, school districts, students, parents and the community.   
  • INFORMATION DISSEMINATION through packets, brochures, web site downloads, email and telephone conversations.  
  • LIBRARY of DVDs, videotapes and books. 
  • REFERRAL to physicians, therapists, community services, and state and county agencies.  
  • ADVOCACY through assistance with ARDs, IEP, 504 or OHI classification 
  • PARENT ADVOCACY training.   
  • SUPPORT GROUPS throughout the state.  
  • CHILDREN'S WEEKEND camping program "du Ballon Rouge."
  • FAMILY ACTIVITIES such as baseball games, museum visits, swim parties, theater outings and more. 
  • SPECIAL FUNDING sources 
  • ...and much, much MORE! 

Call Tourette Texas at 281-238-8096 (toll-free 1-866-894-8686) or email [email protected] for more information.  Visit our web site at www.TouretteTexas.org.  If you have needs other than those listed above, please let us know and we will do our best to help. 

How Can You Help Tourette Texas? 

Tourette Texas funds its services through private donations, fundraising events and grant support.  We receive no state or federal funding.  You can help Tourette Texas and support Texas families dealing with TS by:

  • ATTENDING our fundraising events (e.g., our major Gala held each January, Targets for Tourette's Sporting Clay Shoot on April 15; or our Tee-Off for Tourette and Takeaway Tourette golf events),
  • DONATING items or gift certificates for Silent Auction at either Gala or Tee-Off,
  • ORDERING a tribute card sent in honor of someone's special event or sent in someone's memory  
  • CONTRIBUTING via cash, check or credit card to our general fund or a support group of your choice
  • MAKING A MATCHING GIFT through your employer.  Check if your company does this!
  • SHOPPING through AMAZON SMILE or iGIVE.
  • DESIGNATING TSA of Texas to receive 10-100% of your final sale price the next time you list something on EBAY.  Or look for listings that support Tourette Texas when you shop at the TSA of Texas eBay Giving Works page.
  • LINKING your Randall's or Tom Thumb Remarkable Card to charity #2493, or your Kroger Plus Card to #82092 (see article above)
  • MAKING PAYROLL CONTRIBUTIONS via Community Health Charities. CITY OF HOUSTON EMPLOYEES - use code #1314

All donations are tax deductible.  Learn More>>  

Bonne Nouvelle is published quarterly by TSA of Texas.  It is co-edited by Sheryl Kadmon & Cindy Sacks.