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Winter 2018
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Volume 8, Issue 1
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BONNE NOUVELLE
Your "Good News" from TSA of Texas |
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TSA of TX: Helping Children and Changing Lives
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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 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 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.
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From the President - Michael Conway
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 | | Michael Conway |
Happy New Year to our Tourette Syndrome Association of Texas family - which includes each of you who live with Tourette Syndrome (TS), have a child, family member or friend with TS or support our organization in a number of different ways!
We are anticipating an exciting and successful 2014 with new events and programs as well as improving upon those which were a success in the past year. Please start the New Year by joining us at our annual TSA of Texas Gala: Shimmer & Shine: Shedding Light on Tourette's Syndrome on January 30. This is our major fundraiser, an entertaining evening which allows us to provide you with events and programs throughout the state.
"A life is not important except in the impact it has on other lives." - Jackie Robinson
Please think about Jackie Robinson's quote for a moment.
How can you make an impact on other lives?
I am asking you to consider how you can directly impact other lives by becoming involved with our chapter. The TSA of Texas supports thousands of individuals and families, affected by TS, every year. Sheryl Kadmon, our Executive Director, Cindy Sacks, Director of Programs and Development, our Executive Committee, Board of Directors, Support Group Leaders, donors, medical liaisons, advocates, and many other volunteers are making a big impact throughout our state! There are so many ways in which you can make this a better year for others by joining us.
Please look through this newsletter, and on our website, for events in which you feel you can support our mission. Attend and help out at any of our support groups; attend the Gala or donate an auction item; make a financial donation to our camp, especially if it has positively affected your child in the past - your giving directly impacts a camper by providing them with a place where they can learn how to live a successful life with TS; or simply advocate about TS on a daily basis. All of these activities impact the lives of those with TS.
I look forward to visiting with you at one of our many events and listening to your ideas on how we can better serve those living with Tourette's Syndrome.
Michael
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Texas Hotlines | |
Houston: 281-238-8096
Toll Free: 866-894-8686
Emergency Pager: 281-932-0632
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Support Groups
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All support groups are FREE of charge and have supervised fun for kids with TS and their siblings while adults meet separately. TSA of Texas has support groups in:
To start a support group in your area, please contact us toll free at 866-894-8686.
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Shimmer & Shine: Shedding Light on Tourette's Syndrome
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JOIN US at our fabulous TSA of Texas Fundraising Gala!
Thursday, January 30, 2014
Chairmen: Margaret and TJ Farnsworth
Honorees: Ian J. Butler, M.D., Randy Roach and Kathryn Hargrove
Houston Country Club, #1 Potomac Drive, Houston
The Shimmer and Shine Gala is a festive evening of reception, dinner, entertainment, awards
and Auction. Proceeds help TSA of Texas fund our many programs and activities throughout the entire state.
RESERVE YOUR TABLES AND TICKETS NOW.
Individual tickets start at $200 each and Tables of 10 start at $2,000.
CLICK HERE for Invitation.
CLICK HERE for Reply Card.
DONATE ITEMS OR CERTIFICATES FOR AUCTION.
Ask the restaurants, hotels and stores you frequent to donate.
CLICK HERE for Auction Donor Form.
Unable to attend? Cash donations of any size are always welcomed.
   
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Show Us Your Creativity!
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We invite you to share your stories, poems, drawings
or more for January Gala Program!
Adults AND Children
Please submit your original art, poems, stories for inclusion in our January Gala Program. Those whose arts/writings are included will receive a copy of the Program.
Email to TouretteTexas@aol.com or mail originals to Cindy at Gala Program, 9407 Brown Leaf Circle, Houston, TX 77096. Do not delay -- deadline is 1/16/2014.
We welcome submissions from persons with TS, siblings or parents. We would love art and stories from all of our TSA of Texas family. You may also include your photograph, if desired. Be sure to tell us your first name, city and age (if a child).
Our Gala theme is "Shimmer and Shine: Shedding Light on Tourette's Syndrome." If possible, your submissions should reflect this theme.
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3rd Annual Targets for Tourette's
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Mark you calendar now to attend the 3rd annual
Targets for Tourette's Sporting Clays Shoot
Friday, March 21
Greater Houston Gun Club
6700 McHard Road
Sporting Clays, dinner catered by Reef Restaurant, auction, live C&W music by the Tommy Alverson Band and boot-scootin' dancing under the stars!
Teams of four shooters start at only $2,500. Sponsorships available.
This is TRUE TEXAS FUN!
  
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Camp du Ballon Rouge
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Applications are now being accepted for our
12th annual Camp du Ballon Rouge Weekend
Friday, March 28 through Sunday, March 30
Sending your wish, by red balloon, into a clear, blue Texas sky with hopes
that it will come true - anything is possible at du Ballon Rouge!
Du Ballon Rouge (dBR) is a unique time and place. Held annually in the hill country of Texas, dBR provides a setting for children with Tourette's syndrome to experience events and activities that can change the quality and outcome of their life.
"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!
The program, founded in 2003, is designed for children between the ages of 6 and 18 whose primary diagnosis is Tourette's syndrome (TS). Many participants exhibit other TS related conditions such as obsessive compulsive disorder (OCD) and attention deficit disorder (ADD). Campers are assigned to cabins based on their age and gender. They experience activities both as a cabin and as a group. Weekend activities include fishing, horseback riding, canoeing, arts and crafts, ropes challenge course, swimming, and team sports. The environment is fun, safe, and positive, and campers are challenged to reach their individual potential. Visit the TSA Camp dBR web page here to learn more and to download an application packet. |
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TSA of Texas Support Groups
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TSA of Texas currently hosts support groups in Austin, Corpus Christi, Dallas, Fort Worth, Gulf Coast region, Katy, Lubbock, Rio Grande Valley, San Antonio, Tyler and The Woodlands.
A Family Activity Group meets quarterly in Denison and a NEW Support Group should start in the Fort Hood/Abilene area in 2014.
These groups are run by highly-trained volunteers and provide speakers, information, support, activities, demonstrations and parties. Both children and adults attend (siblings too!) and the children generally have separate activities during meetings. Meetings are monthly, bi-monthly or quarterly, with meetings starting in February of each year.
Visit the Support Group web page to learn more. Contact your support group leader to get on their list for meeting updates. |
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Save the Dates
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Contact your support group leader for information on February meetings.
January 30, 2014
TSA of Texas GALA Fundraising Event: "
Shimmer and Shine: Shedding Light on Tourette's Syndrome."
Our major fundraiser for the entire state. Reception, entertainment, dinner, Live and Silent Auction. Chairmen: Margaret and TJ Farnsworth; Honorees Dr. Ian J. Butler, Randy Roach and Kathryn Hargrove. Reserve your Table or Tickets NOW. Tables of 10 start at only $2,000 and Individual Tickets start at $200. CLICK HERE for information information.
Cash donations of any size are always welcomed.
Items and certificates for Silent Auction are also being accepted. CLICK HERE!
Your support is very much appreciated and is very important to help us continue our mission and programs throughout the state.
March 21, 2014
JOIN US at our third annual: Targets for Tourette's -- Texas fun!
Clay shoot event, dinner, live Auction and live entertainment. Teams of four shooters, individual shooters and dinner/dance only tickets. Visit our
T4T page for photos and details from 2013. Email Cindy at TouretteTexas@aol.com with your mailing address to receive your 2014 invitation via mail.
March 28 - 30, 2014
12th Annual Camp du Ballon Rouge
Visit our Camp page for more information. Applications for our 2014 Camp are now available on-line and MUST be completed and approved by the TSA of Texas office for all children attending, whether new or returning campers. FREE to Texas families -- thanks to the funds raised at Tee-Off, Gala and Targets for Tourette's, as well as the volunteered time and incredible dedication of our dBR physicians, nurses, counselors and staff.
Monday, October 28 SAVE THE DATE --Tee-Off for Tourette's--20th annual Charity Golf Event. Canongate at The Woodlands -- Panther Trail Course. Teams, single golfers, sponsorships, dinner/auction only tickets all available. Contact Cindy at TouretteTexas@aol.com for more information. |
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Support TSA of Texas While You Shop!
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If you purchase groceries at Randalls, Tom Thumb or Kroger,
you can help TSA of Texas every time you shop!
 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. For Kroger, grab your Kroger Plus card and go to www.krogercommunityrewards.com. Sign in and go to My Account and then to Account Settings. Once there, look to the right and edit "Community Rewards" by putting in #82092 (Tourette Syndrome Association of Texas). This is a NEW system for Kroger, so you MUST re-link this year -- they no longer scan bar codes. This new system is so much easier than you think. However, if you need further assistance, either ask the Kroger Courtesy Booth to help, or email Cindy at TouretteTexas@aol.com for further instructions. This is an incredibly easy way to support TSA of Texas! Ask you family and friends to link their cards also. There is NO COST to you to do this and TSA truly appreciates every penny we receive!
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"Good News" from Our Families
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 | | Justin Brown |
Justin Brown, of Austin, is an adult living with TS. A molecular biologist, Justin led a team effort in 2013 to develop a blood test designed to tell people with chronic myeloid leukemia how well their therapy is working. The test will now go through a clinical trial and FDA review before being launched.
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Deborah's Phi Theta Kappa items
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Deborah Collins of Santa Fe, TX, who was a student at College of the Mainland, Texas City, will graduate with Phi Theta Kappa honors in May 2014. She completed the Medical Assistant program with a GPA of 4.0. Her son, Cory Collins, who has Tourette's, will also be attending College of the Mainland this year to pursue a career in Computer Networking Maintenance. They have been a part of the TSA family for many years and we wish them both the best in their new careers.
Adam Farris is currently living in Hendersonville, North Carolina at Beacon Transitions, a community created to support young adults as they master the skills necessary for independence or a college experience. Adam graduated from A-B Technical College to become a Certified Notary Public. Adam has some advice for those with unique abilities, "Anyone who thinks they are disabled should get up, go outside, and take a stroll," he says. "Its a beautiful day to have unique abilities!"
 | | Lauren and Corianna |
Lauren King, age 10 of Cypress, has a love for horses. Lauren has an arm tic where she jerks her arm. It has become so bothersome in the last few months that Lauren at times wears a custom-made orthopedic brace for the tic. However, when Lauren rides, it is almost as if she doesn't have TS. She can compensate if need be (move her arm straight and to the side of horse). Her horse, Corianna is 17, and a very well trained , kind and gentle soul. Kids with TS can do amazing things. When Lauren canters and jumps on Corianna, her parents says they almost never see the tics and they never hear sounds when she rides. Lauren thinks this is very cool and wanted to share.
Rachel Marsh, age 13 of Plano, had a lead role in the school play. A week later, she gave a 5 minute talk in front of the entire church congregation. Rachel has had a severe coughing tic recently --- and she did both events without a single cough.
 | | Aidan Masterson |
Aidan Masterson, age 10, of The Woodlands has earned his Black-Brown belt in Kuk Sool Won martial arts. He also completed several 5K running races and maintained all A's and B's in 4th grade this year. In October he was thrilled to be able to co-pilot a twin-engine plane through the Dallas-based Challenge Air program. He recently acquired a pet Leopard Gecko which he has named Sandy. His family is very proud of his continued success!
Would you like to share YOUR "good news" in our next e-newsletter?
Email information and photos to TouretteTexas@aol.com. Deadline for our next issue is 3/30/14.
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Help Find the Genes for TS
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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.
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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. |
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How Can TSA of Texas Help You?
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TSA of Texas is here to assist families dealing with TS throughout the state. We offer:
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EDUCATIONAL PRESENTATIONS for physicians, school districts, students, parents and the community.
- INFORMATION DISSEMINATION via 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.
- 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 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. Visit our web site at www.TouretteTexas.org. If you have needs other than those listed above, please let us kno w and we will do our best to help.
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How Can You Help TSA of Texas?
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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:
All donations are tax deductible. Learn More>>
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