Winter 2010Vol 4, Issue 3
 Bonne Nouvelle
Your "Good News" from TSA of Texas

TSA of TX:  Helping Children and Changing Lives 

     Tourette's syndrome (TS) is a chronic neurobehavioral movement disorder that begins in childhood.  Those affected make motor movements and vocalizations they cannot control.  Additionally, many are plagued by obsessive compulsive disorder, attention deficit hyperactivity disorder, dysgraphia and behavioral issues.  Today's estimates indicate up to 3 percent (1 in 33) of all children may have Tourette's syndrome.  In spite of its high incidence, TS continues to be greatly misunderstood.  Although medication may help control the symptoms, as of yet there is no cure.  TSA of Texas, one of the largest Chapters in the country, 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. 

Has TSA of Texas Helped You or Your Family?

     We would love to hear it from you!  If you could take a few moments of your time to let us know how TSA of Texas has impacted you or your family, we would be very grateful.  Please send your story to tourettetexas@aol.com.

 
Happy Holidays
 
from
 
TSA of Texas!
Save the Date!
  • January 27, 2011- TSA of Texas Annual Gala Fundraiser.  You won't want to miss out on a fabulous evening and a fun way to support TSA.  To make sure you receive your official invitation, please send your name and mailing address to TouretteTexas@aol.com and reference "gala invitation" in the subject line. 
  • January 2011 - Watch for the new and improved TSA of Texas website(www.TouretteTexas.org).
  • March 25 - 27, 2011 - TSA of Texas' annual children's camping weekend, du Ballon Rouge.  Further information and application forms will be available online in January.  
In This Issue
A Message from the President
2011 Gala: Taking Wing
The Holidays...Joys vs. Stress
TSA of Texas Holiday Tree
Bullying 101
Calm the Homework Rush
Interesting Links
Help Find the Genes for TS
Brain Imaging Research Studies
Recent TSA of Texas Happenings
Support TSA of TX When You Shop
Grandmother Leads TS Forum
Thank You, Emily Stark!
Thank You Supporters!
"Bonne Nouvelle"
Join our Mailing List!
Texas Hotlines
Houston:  281-238-8096
Toll Free:  866-894-8686
Emergency Pager: 800-209-0796
Quick Links

Find us on Facebook 

Texas Support Groups
TSA of Texas has support groups in AustinDallas, Fort Worth, East Texas/Golden Triangle, Gulf Coast, Katy, Lubbock, North Houston and San AntonioLearn More>>To start a support group in your area, please contact us toll free at 866-894-8686.   
 A Message from the President
Daryl Brister     Well, we're about to close out another year.  Hard to believe we've made it this far, isn't it?!  Think back to a day, or days, this year when you felt like you just couldn't take it anymore; it was just too much to deal with.  Yet, here you are, with all that behind you.  So, give yourself some praise for making it through 2010.  Thanks to either ourselves, family, friends or sometimes strangers who helped us get through those days, we can look back to see how much we've learned.  
     One big reason for being on this journey we call Tourette's syndrome is that we grow as individuals. Our kids grow as well, even though you may not see or feel anything has changed. They take close notice of each of us, and it makes an impact on them.
     My oldest son, who has TS, will be turning 24 this week. When we started our journey, we thought we would have adult boys living with us for a very long time. My son still deals with his TS, coping where he can, but he has proven to himself that he's not going to let TS win. He is starting to make his own way in his life, and it is obvious he will go on to be successful at anything he decides to do. It's hard for me to believe at times just how far we've come with both our boys and their TS. They continue to improve each day, at least that's what it now feels like to me. I know I have changed over this journey, and in some ways I have a better understanding of my boys and their struggles. I  believe they will both be better persons for having TS, because they have had to deal with and handle more than many of us will in our entire life time.
     I hope you will look to 2011 with hope for you and your kids, knowing how much you have learned over this last year. Thanks to each of you for letting TSA of Texas be a part of your family's lives. We hope we've been able to help each of you in one way or another, and we look forward to the New Year and new opportunities. 
Daryl    
Please Join Us for Our 2011 Gala:  Taking Wing 

TakingWing

    
We invite you to attend the 2011 Tourette Syndrome Association of Texas, Inc. 25th Anniversary Gala Fundraiser, to be held Thursday, January 27, 2011 in Houston.

  

TSA of Texas' 2011 Gala is fast approaching and we hope you will join us at this exciting event!  The Gala is TSA of Texas' largest fundraiser and 2011 celebrates our silver anniversary.  Held in the elegant Houston Country Club, the evening starts at 7:00 PM with cocktails and an incredible silent auction, and will be followed by a delicious gourmet dinner.  If you'd like to join us but have not yet received your invitation, please contact us at tourettetexas@aol.com.  Proceeds from the Gala benefit our families throughout the entire state, providing funds for Camp du Ballon Rouge, support group meetings and parties, educational support, materials on TS, events such as Museum Day, direct client services and much, much more.    

 

Tickets, tables or donations received by January 10, 2011 will be acknowledged in the evening's Program.  Click here to download a reply card with pricing information.  Even if you cannot attend, a cash donation of any size is always welcomed. 

 

Or -- give of your time and help solicit items for auction.  Visit your favorite restaurant, hotel, spa, sporting goods store, etc. and ask for a gift certificate.  Perhaps you have an unsued wonderful piece of crystal or silver or an antique to donate.  Items from all cities are welcomed and needed - and all donations are tax deductible (in accordance with IRS regulations) for the giver.  Download an Auction Donor Form here.  

 

On behalf of the Tourette Syndrome Association of Texas and the people it serves, we thank you in advance for your generous support.  

Send Us Your Art, Poems or Stories!   

We are seeking your artistic and literary creations to showcase in the January 27, 2011 Major Fundraising Gala Program.  Children or adults with TS, siblings, parents, spouses and others are all invited to contribute.  Tell us your story, draw a picture, or compose a poem! 
 
Our 2011 Gala theme is "Taking Wing: Celebrating 25 Years of Helping Texans with Tourette's Syndrome Soar" (using a butterfly motif), and your creations are welcome to complement this idea if you wish.  Include your name, address with city, ZIP, and age (if a child). The Program goes to press in mid-January, so we must receive your items NO LATER than January 7, 2011.   
 
Handwritten and hand-drawn items are welcome and will be scanned for placement.
 
Please mail originals to:
Cindy Sacks

9407 Brown Leaf Circle       

Houston, TX  77096

or email to:  TouretteTexas@aol.com.

The Holidays:  Joys vs. Stress
by Gary Frank,
National Executive Vice President

The holidays are supposed to be times of joy, togetherness and peace. At the same time we all know there are competing pressures...for buying the perfect gifts, decorations, social commitments, obligations of all kinds, religious observance, time pressures, crowded malls, BLACK FRIDAY, CYBER MONDAY and...family visits!
 
Feeling holiday stress yet?  What to do? Trying to find the right balance?
 
Recognizing the presence of stress is probably the best first step...then each of us must figure out what will "set us off" and determine a way to manage the stress BEFORE it gets to us! Easy to say...hard to do!
 
Anything that eases stress in a healthy way will help.  Start with planning and being proactive.
 
Changes in routines can be hard for some. It may help to discuss upcoming family visits with our children and relatives...keeping expectations positive but realistic might help. Enjoying family time is great, but if the visit gets to be too much, it's probably a good idea to arrange for break times during the visit.  If some relatives are less than patient or understanding about TS, you may want to try to talk to them or intermediaries before the gathering. It's also helpful to remember that everyone feels stress at holiday time and that you are not "different" for feeling it, too.
 
Watch out for over-eating and eating those things that might have negative affects...too much candy and cookies, drinking for adults, changes in foods and diet.  Getting enough sleep, drinking enough water and exercise...the basic healthy steps people try to follow all year seem especially important now.  (On a serious note, if you feel truly overwhelmed at holiday time, and that things are really too much to bear, please contact your doctor or therapist, or go to the nearest Emergency Room, or call the local police. )
 
Talk to family members and others so that needs related to TS can be taken into consideration. You will know what works for you and your family! Realizing that each of us has individual needs...try to make time for things that relax us so we can enjoy the best of the season.

TSA of Texas Holiday Tree at the Houston Museum of Natural Science

2010 Holiday Tree

TSA of Texas was invited again to have a Holiday Tree at the Houston Museum of Natural Science.  This is a great opportunity to bring awareness to TS and to our organization.  This year's tree was decorated using the gorgeous butterflies made by our wonderful kids (and adults) at the TSA of Texas Support Groups.  
 
The tree looks absolutely beautiful, as you can see from the attached photos!  We will use these same fabulous butterflies as table decorations at our January Gala and we know they will add so much festivity to the tables!
 
Many, many thanks to everyone who made a butterfly or helped someone else make a butterfly!  Also, thanks to Barbara for purchasing extra decorations and to Sheryl, Dianne, Cindy and Janet McD. for decorating the tree.  
                                                                                                    
Bullying 101:  What Children, Parents and Teachers Need to Know 
                                 bullying_TSA_sp2010p1
Schoolyard bullies have always existed and adults have often diminished their cruelty saying, "boys will be boys" or "bullies back down when you stand up to them." But children with Tourette's syndrome are often targeted by their peers for an especially cruel dose of bullying and there are constructive things that parents, teachers and children can do. Inside TSA has tapped two experts Megan Moiser, M.A., Olweus Bully Prevention Trainer, who has TS and Kathy Giordano, TSA Education Specialist, for insights and strategies that work.

Click here to learn more about:
  • Defining Bullying: Sticks and StonesTics and Targets: Bullying of Children with TS
  • Standing Up or Standing Down: Responding to Bullies
  • A Parent's Role: Dos and Don'ts
  • The Buck Stops Here: At the Front of the Class
  • Virtual Bullying: Tweets and Social Networking
  • Changing the Environment that Tolerates Bullying Through Awareness
  • 
Best Ways to Calm the Homework Rush

by Ann K. Dolin, M.Ed.

President, www.ectutoring,com

 

"My kid always rushes through her homework!" I hear this complaint from many parents. As adults, it's difficult for us to understand why our children can't slow down, take time to focus, and check their work. Rushing is not a serious issue if your child occasionally races through homework because she has "better things to do." Rushing only becomes a problem when your child can't slow down, seems unmotivated to do well, and often turns in work that is inaccurate and contains careless errors. For this type of student, rushing is frequently a daily habit.

 

I'm a big proponent of establishing a Dedicated Homework Time, otherwise known as DHT. It's a scheduled block of time each weekday that is dedicated to homework, whether the student says she has it or not. DHT helps break the rushing habit. Regardless of how quickly your child finishes homework, the entire DHT should be dedicated to academically related tasks. If she finishes before the DHT is up, she can study for a test, work on a long-term project, organize her notebook, or read.

The general rule of thumb is that the total time spent doing homework should be equivalent to 10 minutes per grade level. For example, a third grader's DHT should be 30 minutes; 4th graders should complete 40 minutes and so on. Once 7th and 8th grade rolls around, I recommend an hour. Students in grades 9 - 12 benefit from 90 minutes of DHT. I've found that for many parents struggling with the homework issue, implementing DHT is the best place to start. The question then becomes, "How do I do it?"  Read More 

 
Interesting Links
Just click on the links below for more information. 

"Toby's 'Yep...That's My Thing" is a new story for young people.  Toby moves from the city to the country...fortunately finds some friends who share his love for baseball...but in the process finds out about his having TS in a surprising way!  Plus, he comes to find that baseball is more important to his friends than his tics!

Videos from the 2010 National TSA Conference are now online:

New Articles are available for young adults and adults:

The information provided in this material was supported by Grant/Cooperative Agreement Number DD000343 from the U. S. Centers for Disease Control and Prevention (CDC).  The contents are solely the responsibility of the authors and do not necessarily represent the official views of CDC or TSA.

Help Find the Genes for TS
The Tourette Syndrome Association International Consortium for Genetics (TSAICG) has identified several chromosomes that may contain genes for TS.  The TSAICG is collaborating with the National Institute of Neurological Diseases and Stroke (NINDS) and TSA to continue genetic studies and confirm these findings.  But to do so,

We need to enroll 3,000 people who have TS.

Taking part in the study involves answering questions about your tics and related symptoms.  Or, if you are the parent of a youth with TS who is 6 to 17 years old, answering questions about your child's symptoms.  If your answers to these questions qualify you for the second part of the study, you will be asked to donate a sample of blood for genetic analyses. 

To learn more about this research, please visit  www.findTSgenes.org.

Brenton Brister & Team

Brain Imaging Research Studies
We are currently conducting two brain imaging studies to learn more about the roles of two brain chemicals (dopamine and serotonin) in Tourette's syndrome and obsessive-compulsive disorder (OCD).

People with Tourette's syndrome (TS), people with TS and OCD, people with OCD, and healthy people without OCD and without TS, ages 18 to 70 years are needed to participate in brain
imaging research studies performed at The Johns Hopkins University and supported by the National Institutes of Health.

Participants will be asked to take part in:
1) comprehensive physical, psychological, psychiatric, and neurological examinations,
2) positron emission tomography (PET) scans, and
3) a magnetic resonance imaging (MRI) scan.

Participants will receive compensation for their time. Travel expenses to Baltimore, MD and accommodations will be covered. 

To learn more and have your questions answered, contact: Dr. James Brasic at 410-955-8354, Dr. Vanessa Raymont at 410-955-0255  or Mr. Stephen Condouris at 410-955-8501
Note: By contacting the investigators, you are in no way obligated to participate.

Principal Investigator: Dean F. Wong, M.D., Ph.D.
JHM IRB Protocols #s: 98-11-29-04 and 94-06-21--05                             

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Recent TSA of Texas Happenings   
  • October 16:  Macy's Shop For a Cause.  We appreciate everyone who bought and sold shopping passes!  Special thanks to our great Houston helpers, Adam, Katherine, Stephanie, Dexter, Debra and Ashli, who gave up their Saturday to sell passes at the Houston Galleria Macy's. 
  • October 18:  Our 16th annual Tee Off for Tourette Charity Golf Event was a huge success this year.  Many thanks to all our players, sponsors, volunteers, golf pros, Canongate at The Woodlands golf course, Tyler Morris for speaking at the dinner,  and of course our event chairmen, Daryl and Barbara Brister.  
  • October 29:  California Pizza Kitchen fundraiser throughout Texas.  Special thanks to Adam and to Lacie of CPK.  We hope to hold this fundraiser again in the Spring. 
  • November 7 - 14:  Museum Day.  Families in Austin, Dallas, Fort Worth, Houston and San Antonio enjoyed our annual Museum Day outing, courtesy of TSA.  
  • December:  Support Group Holiday Parties.  Support Groups throughout Texas held Holiday parties, some of which included gingerbread house decorating!
  •                                        
                                      
HELP TSA of Texas Every Time You Shop for Groceries!

     Just print out any or all of the cards below and take them to your local Tom Thumb, Randalls or Kroger.  Ask the cashier or the courtesy desk staff to link your Remarkable card or your Kroger Plus card to TSA of Texas.  The stores will then donate a percentage of your eligible purchases to TSA of Texas.  How easy is that?!  Please ask your friends & family to link their cards also.  If you have trouble printing these cards, email Cindy at TouretteTexas@aol.com. 

  


  

Grandmother Leads TS Forum in New Braunfels
Doris Daner's eight year old grandson, Evan, has TS.  Doris recognized most people know very little about TS, so she organized a forum to provide more information for people in her community.  Twenty-five people attended, most of whom knew nothing about TS prior to the forum.   The group first viewed the award winning video "I have Tourette's But Tourette's Doesn't Have Me."  After the video, Evan used the portable microphone to share his own remarks with the group and then he and his mother, Jalene Potter, answered questions.  Brochures and hand outs provided by TSA of Texas were available for everyone.  

The program was a huge success!  Thank you, Doris, for making such a difference in Evan's life and in the lives of others dealing with TS!

If you would like to host a similar forum in your community, please contact TSA of Texas at tourettetexas@aol.com.
Thank You, Emily!
Emily Stark
Emily Stark mugs for the camera at her "going away" party.  Emily has recently stepped down as the Dallas/North Texas Support Group leader after more than 8 years of service.  Thankfully, she will continue to volunteer on the Speaker's Bureau and other TSA of Texas activities. 

Emily, thank you so much for your many years of dedication and service to TSA of Texas!  You have made such a difference in the lives of so many families dealing with TS.  You will definitely be missed!
Thank You to Our Supporters!   
    
     Our deepest thanks to all of the individuals and organizations that allow us to continue our mission of education, support, advocacy and direct client services.  Your generosity truly make a difference in the lives of children and families struggling with the challenges of Tourette's syndrome. 

"Bonne Nouvelle"
Danny Adams became an Eagle Scout last year and his Court of Honor was held in May.  He continues to be involved with scouting as an adult leader and will be helping out at Winter Camp as an assistant merit badge counselor for the Disabilities Awareness merit badge.   Dylan Alaniz of Lubbock, age 10, has received 3 tickets for good behavior in school.  He was recognized for staying on task, excelling in academics and behavior, following cafeteria expectations
Chris Guhlin
and remembering to go in early and ask for make up work after being ill.  The icing on the cake was that he was elected Teen Student of the Month in October. 
Isaiah DeAnda of Lubbock, age 10, made the
Kyle Hill
4.0 honor roll this six weeks again.  Timothy Gray, age 9, received straight "A"s on his report card.  He also has a Christmas piano recital coming up soon.  Christopher Guhlin, age 18, recently made Eagle Scout.  His Eagle Project was making three 8 foot long benches for Verne Cox Multipurpose Recreation Center.  He also recently received his driver's permit.   
Jackson Hatcher, a second grader in Southlake, had a perfect report card this last six  weeks, is reading way above grade average, and was in the second grade musical!  He is now the proud owner of a dachshund puppy named Ava Lou, who he adopted from the Collin County Humane Society. Having a pet, and the responsibility that goes with it, has been an amazing thing for Jackson.   Leslie Hatcher of Southlake (Jackson's mom) also has TS, but that did not stop her from having a full and productive life.  She is married with two lovely children, is an RN, and worked for many years in health care. Plastic surgery, critical care, and surgical recovery were her areas of specialty.  For her, the key has always been to structure my life to suit her, not everyone else.  Education, and surrounding yourself with good people.......that's her advice to those growing up with TS.   Kyle Hill of Bastrop, age 9, played a captain and had some of the hardest lines in his summer play.  Joshua McCain of Lake Jackson, age 13, received 2nd place in Sparring and 3rd place in Forms at the United TaeKwonDo Alliance National Championships in November.  He also has an A/B average in his homeschool program.  Ransom McCoy, a 7th grader in Fort Worth, received straight "A"s for the second six weeks in a row.  Ryne Nardecchia of Spring, age 15, placed th
Michael Plante
ird and won $225 in the Young Voices of Houston Semifinals, a voice competition for Houston high school students.  He also sang at the HEB Feast of S haring Dinner for 7,000 at the George R. Brown Convention Center.  Michael Plante received his PhD in Electrical Engineering in August 2010 from the University of Texas at Dallas.  He recently accepted a position with a compnay in Northern Virginia. 
Patina Powers, an ESL teacher in Fort Worth, recently assisted a student to earn citizenship.  "I've gotten more from my students than they have from me and I want to encourage other people to become ESL teachers if they have the time. It's worth it."  Austin Weber of Katy, age 14, made High Honor Roll and was named MVP of his Junior High basketball team. 
 
 
                 Congratulations to all of these hard working superstars! 
     Please send us your "Bonne Nouvelle!"  Has your child received straight A's?  Recently graduated from college?  Are you, as a person with TS, successfully juggling home and family?  We would love to hear about your "good news" for future issues.  Please send your information to TouretteTexas@aol.com.
 
Physician Referral List
TSA of 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 TSA of Texas Help You?
TSA of 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 via packets, brochures 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.  
  • SUPPORT GROUPS throughout the state.  
  • CHILDREN'S WEEKEND camping program "du Ballon Rouge."
  • FAMILY ACTIVITIES such as baseball games, museum visits, swim parties, and more. 
  • SPECIAL FUNDING sources such as the Kenneth H. Davis Family Assistance Fund and Fund A Need. 
  • ...and much, much MORE! 

Call TSA of Texas at 281-238-8096 (toll-free 1-866-894-8686) or email TouretteTexas@aol.com for more information.  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 TSA of Texas? 

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

  • ATTENDING our fundraising events (e.g., our major Gala held each January and our Tee-Off for Tourette in October)
  • DONATING items or gift certificates for Silent Auction at Gala or Tee-Off 
  • ORDERING a tribute card sent in honor of someone's special event,  
  • CONTRIBUTING via cash, check or credit card to our general fund or a support group of your choice,
  • LINKING your Randall's Remarkable Card to charity #2493, or 
  • REQUESTING a Kroger Neighbor to Neighbor bar code to link to your Kroger Share card..

All donations are totally tax deductible.  Learn More>>  

Bonne Nouvelle is published quarterly by TSA of Texas.  It is edited by Shelley Matcha and Cindy Sacks.