Fall 2016

Volume 10, Issue 3

 

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
MichaelConway
Michael Conway
It is an exciting time for the Tourette Association - Texas Chapter!

Are you simply sitting idly by, not getting involved in the action?  Do you read the newsletter to learn of ways to become involved?  Do you feel overwhelmed by your child's, or your own, disorder(s)?

One reason Tourette's is misunderstood, and even looked 'down' upon, is because not enough members of its small army (not just in Texas) put up enough of a fight (fight = getting out there and educating others, volunteering, mentoring, or raising funds...in any way you know how)!

We're all overwhelmed by TS and its related "co-morbid" conditions, but, we have all been given talents that would enable us to help our cause in some way, and, this organization that exists solely to assist you.  I urge you to read through this newsletter - and simply select one event, support group, or effort in which you will commit to participating in the near future.  In time, our wonderful organization will cease to provide the numerous services if each of us does not put forth the effort (which has made it one of the nation's top chapters).

This moment, each one of you has the ability to support my personal efforts by simply "liking" a new Facebook page, which, I hope, in time, will be a resource to raise funds for our annual camp, du Ballon Rouge (free to campers).  Also, I have some verbal commitments from local vendors, of their support, if the page attracts a lot of interest. 

I would greatly appreciate if you would click on the following link and "Like" our Trails for Tourette page:  https://www.facebook.com/Trails-for-Tourette-1547543632241373/

This Saturday, November 5, I will represent Trails for Tourette in my first 100-mile trail race (Ozark Trail 100), in the Mark Twain Forest, in southern Missouri.  If the other runners don't figure out the 'noises', in the woods, I will educate each one of them about TS! 
When you decide to enter your own 'race', whatever that may be, I'd enjoy hearing from you so I may return the support you gave to me.

Serving you, always.

Michael

Be Like Mike!

 
You can "Be Like Mike" as he participates  in 100-mile mountain trail races to raise funds for our annual camp, du Ballon Rouge, as well as help spread Tourette awareness to the mountaintops!

We have a limited number of shirts identifying our new venture 
Trails for Tourette and you can order one!  Please be aware these are professional-quality, race fitting shirts you will not see in running or sports stores.  They are meant to be worn while racing - the fit is snug.  We recommend ordering at least one size, possibly two, larger than what you normally wear.

We are offering the shirts at $50 each, which covers cost and postage.  Contact us at TouretteTexas@aol.com to select your size and arrange for payment and delivery.
Join our Mailing List!
In This Issue
From The President
DONATE
Follow Us
Takeaway Tourette
2017 Gala
Texas in Ireland
"Involuntary Interruption"
Save the Dates
Dollars4TicScholars
Tourette Studies
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

DONATE
NOW!

 

Quick Links

Follow us on Twitter

Find us on Facebook

Support Groups

Takeaway Tourette
 

 SELECT SPONSORSHIPS AND TEAMS AVAILABLE!
Click HERE to download SPONSORSHIP form.
Click HERE to download INDIVIDUAL GOLFER or TEAM form.  


Youth Ambassador Reese Wilson and his grandfather Virgil Yoakum hosted an amazing Takeaway Tourette golf tournament last year.  This year will be even better!

2017 Gala Dinner and Auction

Join Chairmen  Carlin and Damon Putman for the Tourette Syndrome Association of Texas annual fundraiser  
La Vie en Rose...Tourette Through Rose-Colored Glasses, 
to be held  Thursday, January 26, 2017 at the Houston Country Club.  The gala is a festive evening of reception, dinner, entertainment, auction and awards. Proceeds from the evening will directly benefit the over one-half million children and families throughout Houston and Texas who are living with Tourette's syndrome. 
 
Celebrate with us as we honor these extraordinary Houstonians :
Charlene and Bill Floyd
Martine Weitz
 
The substantial impact of honorees Charlene and Bill Floyd on the Houston community is delightfully and deliciously discernible! They are the co-owners of many TOP HOUSTON restaurants including Reef, awarded "Best Seafood in the United States."  Their significant generosity, guidance and support for Targets for Tourette's has not only made this a premiere Houston event, but has also made a substantial and lasting impact on the children and families living with Tourette's syndrome in both Houston and the entire state of Texas.
 
Martine Weitz has devoted her life selflessly to family and community.  Many Houston charities have been the lucky recipients of her wisdom and generosity, including:  Arbor Preschool, DIFFA (AIDS), Cystic Fibrosis Foundation, American Cancer Society, the Women's Fund, 2002 Houston Chronicle BEST DRESSED and most recently -- the Tourette Association of Texas.  Martine's hands-on and generous commitment to children suffering from Tourette's in Houston has been truly unprecedented.  Her work has made a lasting and indelible difference.  

For early table/ticket sales, CLICK HERE.
To donate an item for Auction, CLICK HERE.


Texas in Ireland
IanIreland Texas Youth Ambassador  Ian Henry and his mom, Lisa Henry, North Houston/The Woodlands Support Group Leader, had the opportunity of a lifetime.  They traveled to Northern Ireland as part of the newly formed Tourette Alliance.  The Alliance was founded in May 2016 as a collaboration between parents and educators from the US and Northern Ireland.    

Ian served on a panel with other Youth Ambassadors from the US.  Their goal was to show students in NI that even "cool kids" have TS and that they are not alone.  Ian sat on a panel with Sue Connors and other teens, where they answered questions from doctors, teachers, parents and even the director of education for Northern Ireland. Find videos of the panel on Ian's YouTube channel called "Potatoes and Tics".  

Lisa helped with conference preparation and did a presentation on running a successful support group. 

Lisa and Ian were honored to represent Tourette Texas.  It was an inspiring trip that positively affected all who were involved.  

Find Ian's youtube channel "Potatoes and Tics" HERE.

"Involuntary Interruption"
Olga B.
Olga B. is a 17 year old member of our Katy/Sugar Land/West Houston Support Group.  She wrote this moving and inspiring essay about living with Tourette's. 


There I was, leading my team to another victory in the FIRST Robotics world championship competition. It was my freshman year in high school where everything seemed to be going perfectly. Little did I know that in less than a year I would be in a hospital bed, staring at the ceiling, wondering what went wrong. Headaches, stuttering, abnormal behavior, involuntary movements - the doctors couldn't figure out what it was. Test after test after spinal tap after test, there was no explanation for what had been going on for months. I had been out school for over six weeks and there wasn't a single lead to go on, until one of the many neurologists mentioned the words
"Tourette Syndrome."

What? Tourette Syndrome? That funny illness that makes people curse? Last time I had heard of the disorder was in a viral Youtube video that my little brother watched non-stop. I couldn't possibly have that. I did, and shortly after, I was diagnosed. A new chapter in my life had started, as I had to deal with something that I never thought would be a problem with me. Tourette's hit me like a train, for the next year and a half my symptoms would interfere greatly with my life, to the point where I chose to leave the school where I attended for twelve years.

My Tourette's had gotten so violent that I had become dangerous. It was at that moment when I realized there needed to be a change. My first step was to leave my school, which was one of the hardest decisions I've ever had to make. I had to find a school that was better suited for my needs, and luckily I did. My second step was finding a doctor who specialized in Tourette Syndrome. My neurologist at the time was amazing, but he was not specialized in Tourette Syndrome, and in turn, I didn't take the medication that I needed. And my third step was to better understand Tourette Syndrome, which led me to joining a Tourette Syndrome support group and attend a life changing weekend long camp for kids with Tourette's. Once I had finished those three steps, it was time for me to try to re-enter into mainstream life.

Before Tourette's hit me, I was the driver of my robotics team, a teacher and staff member of my Taekwondo studio, and an advanced pianist. Now that I have my symptoms under control, I have decided it is time for me to get back into the swing of things. So, I am now part of another high school's robotics team; I now have my second degree black belt in Taekwondo and I continue to teach kids, and I am back with playing the piano, learning an advanced 14-page long piece by Felix Mendelssohn. I do continue to make noises and movements, but now I am able to work with them and control them. I also plan to help educate others by publicly speaking about Tourette Syndrome to raise awareness about the symptoms and misconceptions. I no longer let Tourette Syndrome dictate what I do with my life, and I am grateful to how strong it has made me.

Save the Dates
 
Upcoming Support Group Meetings

Katy/Sugar Land/West Houston -- November 9
Bryan/College Station -- November 10
Fort Worth -- November 12
San Antonio -- December 6
North Houston/Woodlands -- December 8
Fort Worth -- December 10
Katy/Sugar Land/West Houston -- December 14
Austin -- January 11

Learn more about Texas Support Groups   HERE 
Watch 
Facebook Event page
 for other details.

Exciting Upcoming Events!  

HMNS Holiday Tree
Displayed December 1 - January 3
Houston Museum of Natural Science
VOLUNTEER to help us decorate the Tourette Texas tree on 12/1! 
Email TouretteTexas@aol.com for details.

22nd Annual TEE-OFF for Tourette
Monday, February 13, 2017
Black Hawk Country Club, Richmond, TX

BCM/Tourette Texas MEDICAL SYMPOSIUM
"What Makes Them Tic?"
Friday, February 24, 2017

AUSTIN AREA "Tacos for Tourette" Fundraiser
Thursday, March 2, 2017

12th Annual CAMP DU BALLON ROUGE Children's Camping Weekend
Friday, March 3 to Sunday, March 5, 2017
Applications on-line starting in January 

6th Annual TARGETS FOR TOURETTE Clay Shoot & Dinner/Dance
Friday, April 24, 2017
Greater Houston Gun Club


DBR.Logo

Dollars4TicScholars
The Kelsey B. Diamantis TS Scholarship Family Foundation, Inc., d/b/a Dollars 4 Tic Scholars awards college scholarships to students who have Tourette Syndrome. In 2015, they awarded three scholarships, and in 2016, they awarded five. 
 
The 2017 college scholarship application has been posted on their website at  www.dollars4ticscholars.org/application. It must be completed and postmarked by April 15, 2017.
 
Students who will be either incoming college freshman or are already in college for a four-year degree and have a diagnosis of Tourette Syndrome or Chronic Tic Disorder, are eligible to apply.
 
See their Facebook page at Dollars 4 Tic Scholars, or website at  www.dollars4ticscholars.org

THIS POSTING IS FOR YOUR INFORMATION ONLY.  THE TOURETTE ASSOCIATION OF AMERICA AND THE TEXAS CHAPTER ARE NOT AFFILIATED WITH NOR WE WE NECESSARILY ENDORSE THIS PROGRAM.  
 
T-Forward - Research Study for Adults with Tourette Syndrome Nationwide
A clinical research study for adults with Tourette syndrome.
Neurocrine Biosciences invites those aged 18 to 64 who have a diagnosis of Tourette syndrome to see if they may qualify for the T-Forward Study. The primary purpose of this research study is to determine the effectiveness, safety, and tolerability of an investigational medication for Tourette syndrome.
Each person will be evaluated to determine his or her eligibility to participate in the research study. All who qualify will receive the study medication and study-related medical exams and laboratory tests at no cost. Compensation for time and travel may also be available.
If you have friends or family who are also affected by Tourette's, we encourage you to pass this information along. We encourage you to talk to your doctor.
Please contact:  Brian Maynard, PhD   817-744-8844   Brian.Maynard@ntxct.com
 
T-Force green - Research Study for Children & Adolescents with Tourette Syndrome Nationwide
A clinical research study for children and adolescents with Tourette syndrome.
Neurocrine Biosciences invites boys and girls aged 6 to 17 who have a diagnosis of Tourette syndrome to see if they may qualify for the T-Force Green Study. The primary purpose of this research study is to determine the effectiveness, safety, and tolerability of an investigational medication for Tourette syndrome.
Each child will be evaluated to determine his or her eligibility to participate in the research study. All who qualify will receive the study medication and study-related medical exams and laboratory tests at no cost. Compensation for time and travel may also be available.
If you have friends or family who are also affected by Tourette's, we encourage you to pass this information along. We encourage you to talk to your child's doctor. 
Please contact Frank Posada with Insite Clinical Research in Desoto, Texas at 972-331-8738.
 
Keep In Touch!
Check out our LIBRARY of information, see when the next SUPPORT GROUP meeting is in your area, stay current on coming EVENTS.  

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

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


See   PHOTOS on our Facebook Page under ALBUMS


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 TouretteTexas@aol.com 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 TouretteTexas@aol.com 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 TouretteTexas@aol.com 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 The Tourette Association of America - Texas Chapter. 
Co-Editors: Sheryl Kadmon & Cindy Sacks.