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Summer 2014
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Volume 8, Issue 3
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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 |
Thanks to Sheryl Kadmon, Cindy Sacks, our Support Group Leaders, Board members, and the many volunteers, both past and present, TSA of Texas has become one of the most successful Tourette Syndrome chapters, in terms of operations and programs, in the nation.
Well...we can be even better - and the best part is that every one of us can now play an active role! We can become the healthiest and most athletic chapter as well!
We recently partnered with Reason 2 Race (R2R) - a company which assists non-profit organizations in raising money through a variety of events, most geared towards health and exercise. We created this partnership with you in mind! Over the past few years, especially, many of you have expressed your desire to support the Chapter because of the benefits that you or your child have received by participating in the programs or events we provide. This new opportunity will not only support the future of our programs and events, it will give you the opportunity to become healthier and enjoy participating together in events with other TSA of Texas friends and family!
I am sure everyone living with TS is affected a little differently by exercise. Tics may diminish, disappear completely, or even become more frequent and intense. For me, they are constant, sometimes even louder because of everyone moving around me! In May, it took me fourteen hours to finish IRONMAN Texas. From the minute I stepped out of the swim in Lake Woodlands, at 8:30a.m., until I finished the run at 9:00p.m., my tics, and the countless looks from thousands of athletes, spectators, and volunteers on the course were never-ending. It was a constant reminder that I have Tourette's Syndrome!
I know all of us living with TS, and parents of a child with TS, just want to enjoy our daily experiences without all the nuisances that result from the disorder we live with. Cycling 112 miles and running 26.2 miles with a constant neck twitch/ head jerk/grunt, as you can imagine, is probably the most difficult thing I have done. But the point I want to make here is that when I crossed that finish line, fast or not, I WON! I may tic the entire time, and receive constant glares, but I showed my TS that I am the ONE in control and it couldn't stop me from finishing what I started!
Unless you live with TS, I, respectfully, don't expect you to understand how overcome with emotion and powerful this finishing moment was for me. However, and more importantly, is this feeling I experience at the end of each race, the same feeling anyone living with TS might experience after such an accomplishment? If that is a possibility, especially if it is your child who has TS, then you have to find out!
This initiative, partnering with R2R, does not only have the potential of improving the services we provide to you through an increase in funding, but the possibility of improving the self-esteem and confidence of those living with TS through exercise and the accomplishment of completing an event or race.
Please visit our R2R website, http://reason2race.com/tsa-of-texas/, to get started. All you need to do is find an event that looks fun or interesting to you - a walk, a 5K, half marathon, cycling event, or any other event. The event doesn't have to be in your area and you can easily find events by searching the internet. Once you find an event that interests you, register for that event, and then set up a fundraising page at the link above (note: you will need to contact us if the event is not already listed on our page). You will be able to include your own pictures and story to share on your own fund- raising page with your friends and potential donors. You can even create a team (i.e., family or support group and do an event together). I have already listed a few events. The Monster Mash 1K, 5K, or 10K in Houston would be a fun event to do together as many participants wear Halloween costumes during the walk/run.
Camp du Ballon Rouge is getting close - September 26-28! Our 12th year! We really want to get more campers to future camps because of the positive benefits campers gain, but we have to limit the number due to budget limits - remember, there is no cost to the families whose child attends. Raising funds, through this new program, is a great opportunity to accomplish that!
Let me know if you put a team together for an event in or near Houston, as I would like to join you!
Hope to see you out on the course! .... Michael
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YOU CAN BE AN IRONMAN WITH MICHAEL!
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Tri for Tourette Singlet
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Support Michael in Tri for Tourette IRONMAN events -- and be with him
every step of the way!
For a minimum $100 donation, Michael will wear your or your loved one's name on his singlet as he competes in IRONMAN events.
Michael's next event is Sunday, 8/3 in Boulder, followed by Cozumel on 11/30. Read about Boulder Ironman HERE.
With your donation, Michael will wear a red balloon-shaped fabric patch with your loved one's name on his kit during the race -- you can RACE WITH MICHAEL! Your donations will be used to help fund Camp du Ballon Rouge.
Complete and mail/fax the attached form HERE or CLICK HERE to pay on-line. If paying on-line, BE SURE to include loved one's name and note this is for "I Want to Race with 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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20th Annual Tee-Off for Tourette Golfing Event
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Tee-Off is a MAJOR fundraiser for TSA of Texas -- providing funds for Camp du Ballon Rouge, Support Group meetings, In-Service presentations, parties/events and more!
Let's make our 20th Anniversary Tee-Off the BEST ONE yet!
Sign up NOW for Teams of Four Golfers; Individual Golfers; or Dinner only.
Sponsorships of all sizes are available, starting as low as $100.
Donate items for Silent Auction -- gift certificates, sports equipment, tickets, etc.
CLICK HERE for Team/Golfer information.
CLICK HERE for Sponsorship Opportunities.
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Learn About Tourette's Syndrome - FREE Presentations
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 | | Sheryl Kadmon, R.N. |
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, and/or learning disabilities. Between two and three percent of the U.S. population may have Tourette's syndrome. While Tourette's syndrome is not usually life-threatening, the stigma, misunderstanding and misdiagnosis of the disorder CAN devastate a child's life educationally, emotionally and socially.
Sheryl Kadmon, R.N., Executive Director of the Tourette Syndrome Association of Texas, can help you understand this often baffling disorder. Learn diagnostic criteria for T.S.; categories and phenomenology of tics; associated disorders, such as OCD and ADHD; pharmacologic and other interventions; educational and social implications of the syndrome; accommodations and modifications for the classroom; and how to help prepare your children and yourself for maximum success in life.
These free presentations are perfect for parents, adults with T.S., family, physicians, nurses, school personnel and teachers - anyone with an interest in learning about T.S.
Learn about Tourette's Syndrome:
Tuesday, August 5 -- San Antonio Support Group @ 6:30 pm
Saturday, August 9 - Rio Grande Valley Support Group @ 6:00 pm
Wednesday, August 13-- Katy / Sugar Land Support Group @ 7:00 pm
Thursday, August 14 -- North Houston/Woodlands Support Group @ 7:00 pm
Saturday, August 16 - Tyler/Longview Support Group @ 1:00 pm
Sunday, September 7 -- Lubbock Support Group @ 2:00 pm
Tuesday, October 7 -- Austin Support Group @ 6:30 pm
Saturday, October 11 - Corpus Christi Support Group @ 6:00 pm
Saturday, October 18 -- North Texas / Dallas Support Group @ 10:00 am
Saturday, October 18 -- Fort Worth Support Group @ 5:30 pm
For more information: Call 281-238-8096 or email TouretteTexas@aol.com.
Find your specific Support Group meeting location HERE.
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Macy's Shop For A Cause Event
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Save Money on your Back-to-School Shopping by Donating to the Tourette Syndrome Association of Texas!
 HERE'S HOW IT WORKS:
* Donate $5 donation to Tourette Syndrome Association of Texas
* Receive your Exclusive Macy's Shop For A Cause pass
* Shop at any Macy's on Saturday, August 23
* Save 25% ALL DAY with your pass on regular, sale & clearance items, including home -- even save on most brands usually excluded!
* Save 10% on electrics/electronics, watches, furniture, mattresses, rugs & floor coverings)
* Register to win a $500 Macy's gift card! (One winner per store)
ORDER YOUR EVENT TICKET TODAY!
Send check, payable to Tourette Syndrome Association of Texas, to Cindy Sacks, 9407 Brown Leaf Circle, Houston, TX 77096. Be sure to include your mailing address, so your ticket
can be mailed to you! $5 per ticket.
To pay by PayPal or Credit Card, CLICK HERE.
Share this information with friends!
Enjoy a Group Shopping Experience with your friends or buy extras for your family.
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Camp du Ballon Rouge
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RESCHEDULED DATES for the
12th annual Camp du Ballon Rouge Weekend
Friday, September 26 through Sunday, September 28
CAMP APPLICATIONS ARE NOW CLOSED.
ALL SPOTS FOR CHILDREN ARE FILLED with Campers who had applied for the original March dates.
Due to an unfortunate error at Camp For All, Camp du Ballon Rouge has been re-scheduled to Friday, September 26 through Sunday, September 28, 2014.
CAMPERS: We appreciate your patience and understanding of this unavoidable delay. We cannot wait to see you all at Camp in September --and we will get to go swimming this year!
HUGE THANKS to our awesome Camp Physicians, Psychologists, Nurses, Counselors, Support Staff and others who so generously volunteer their time and love each year to make this such an amazing weekend. We are grateful you can accommodate these new September dates.
PARENTS: We will utilize the forms already sent in for the original March dates. However, an updated Physician Form/page 7 (i.e., re-dated and initialed by physician) and current medications/symptoms will be needed prior to Camp. You should be able to take your prior physician form (page 7) back to your doctor and simply have it re-dated and initialed by the physician. Please send the updated form(s) to us no later than 9/1/2014.
The TSA of Texas shared this Camper's sentiments exactly when informed we needed to move Camp:
Hi -- I've attended Camp du Ballon Rouge for going on 6 years. I'm not griping or anything, I just don't understand why we have to wait until 6 months to go to camp. Du Ballon Rouge has a huge impact on my life. I know it's just a mistake, but it is hard for me to get through.
Signed, C.W.
Response from Sheryl Kadmon, TSA of Texas Executive Director:
So very, very sorry! I am also very disappointed. I did not want to wait, either. But, Camp For All only gave me two new date choices, because du Ballon Rouge is such a big camp that we need ALL the cabins and the whole Health Center. The first choice was actually in two weeks - but most of my couselors couldn't come on that date and we can't have camp without counselors. So -- my only choice was the September date. Thank you for your thoughtful email. Please call or email anytime.
Lots of love, Ms. Sheryl
See you in September!
NOTE: CAMP APPLICATIONS ARE NOW CLOSED. ALL SPOTS FOR CHILDREN ARE FILLED with Campers who had applied for the original March dates.
You can help sponsor a child at Camp!
Camp is always tuition-free to our families with Tourette's. However, even with all our wonderful volunteers giving of their time and expertise, TSA of Texas still pays about $350 for each child at dBR. Please send $100.00 (or more) for a virtual "Red Balloon"
and make a difference for a child by helping us pay their way to Camp in 2014!
Camp du Ballon Rouge
c/o TSA of Texas
3919 River Forest Drive
Richmond, TX 77406
All donations are tax deductible in accordance with IRS regulations. |
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Sibling Support and Solutions - New Column
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TSA of Texas welcomes our NEW "Sibling" columnists -- Zach and Shelby
 | | Zach |
Hi my name is Zach and I am 13 years old. I was diagnosed with Tourette's when I was 7.
I have a sister named Shelby and two dogs: Daisy and Zoey. I don't like having Tourette's because it hurts when I have certain tics. For instance, when I jerk my head, I get a headache and my neck hurts. My current tic is spitting and it causes lots of problems with others when I forget and spit on the floor.
I have had lots of tics in the past like rolling my eyes, hopping, coughing, squeaking, hooting and scrunching my face. I don't like when kids make fun of me at school because of my tics and things I do that annoy others. I just want to fit in with the other kids. One thing I like about myself is that I m really smart and make straight A's. Kids sometimes ask me for help in class!
I like to make new friends because I can tell them about my Tourette's myself instead of them hearing from other people that "something is wrong with me." I went to several camps this summer with other kids like me. I liked it because I could be myself and I didn't have to hold it all in. It was really fun because I met a kid like me named John! We now play together all the time.
 | | Shelby |
Hi, my name is Shelby and I am 15 years old and Zach is my brother. It's hard having a brother with Tourette's because like all kids my age (and any age), I like attention, but often times my parents don't pay attention to me because they spend a lot of time dealing with and helping my brother.
It really upsets me when kids bully or pick on Zach because I don't think that should happen to anyone for any reason.
I think more people need to be educated about Tourette's syndrome and whey he does what he does because people don't who understand use their ignorance as an excuse to make fun of others.
Having a sibling with Tourette's has definitely taught me to be more patient with and understanding of others. I hope that everyone else who knows someone with Tourette's will learn these virtues also.
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Zach and Shelby welcome your questions, reflections and advice on dealing with Tourette's
and other matters. What is it like for you to have TS or to be the sibling of someone with TS? Does the TS create problems or has it brought you closer together? what do you do when someone makes fun of your sibling with TS? Send your thoughts to TouretteTexas@aol.com.
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Tim Howard - Bringing Awareness to TS through Soccer
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We all went a little crazy for World Cup Soccer this year -- and much of it was due to U.S. goalkeeper Tim Howard, who has Tourette's Syndrome.
Undoubtedly the best goalkeeper ever in U.S. history, Tim has also brought unprecedented awareness to Tourette Syndrome -- and proved that TS doesn't stop us from reaching our goals.
Need more Tim? Try these links:
National TSA Press Release
Washington Post
KSDK.com
Yahoo Sports
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Free CBIT Webinar
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Presented by the National Tourette Syndrome Association
Tic Management 101 For Parents: Based on a CBIT Perspective
Presented by:
Douglas W. Woods, Ph.D.
Professor & Department Head
Department of Psychology
Texas A&M University
Thursday, August 14, 2014
11:00 AM -12:00 PM Central
Comprehensive Behavioral Intervention for Tics (CBIT) is an evidence-based type of behavioral therapy for people with tic disorders. CBIT is highly structured and taught by skilled and trained therapists.
This webinar will provide a basic overview of CBIT and describe ways parents can encourage and praise independent growth and development based upon CBIT training.
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Note: This webinar is limited to 200 live participants and will be recorded and made available for viewing on the TSA-USA.org website within 3 business days of airing.
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Save the Dates
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Contact your support group leaders for information on upcoming meetings or visit our Facebook page at 'TouretteTexas' for updates and topics.
Sunday, August 3
IRONMAN Boulder -- a triathlon consisting of a 2.4 mile swim, 112 mile bike ride, and a 26.2 mile run. Michael Conway, TSA of Texas President and Camp du Ballon Rouge Founder/Director is competing through Tri For Tourette, raising funds for Camp dBR. Read Michael's story HERE a nd help support his efforts!
FREE PRESENTATIONS on Tourette's Syndrome -- perfect for parents, adults with T.S., family, physicians, nurses, school personnel and teachers. Tuesday, August 5 -- San Antonio Support Group @ 6:30 pm Saturday, August 9 - Rio Grande Valley Support Group @ 6:00 pm Wednesday, August 13-- Katy / Sugar Land Support Group @ 7:00 pm Thursday, August 14 -- North Houston/Woodlands Support Group @ 7:00 pm Saturday, August 16 - Tyler/Longview Support Group @ 1:00 pm Sunday, September 7 -- Lubbock Support Group @ 2:00 pm Tuesday, October 7 -- Austin Support Group @ 6:30 pm Saturday, October 11 - Corpus Christi Support Group @ 6:00 pm Saturday, October 18 -- North Texas / Dallas Support Group @ 10:00 am Saturday, October 18 -- Fort Worth Support Group @ 5:30 pm Find your Support Group Meeting location HERE.
September 26 -28
12th Annual Camp du Ballon Rouge -- RESCHEDULED
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. NOTE: Camp applications are now closed.
Sunday, October 26
Texas A&M Targets for Tourette's event! First ever Texas A&M skeet shoot to benefit TSA of Texas. Four-person shooting teams are $250 each. Friends and family can also sponsor a shooting station for $100. Shirts and caps on sale also. Contact TouretteTexas@aol.com for more information.
Monday, November 3 
Sunday, December 14
Thursday, January 29, 2015
SAVE THE DATE -- Gala fundraising dinner. Details to come.
Friday, April 24, 2015
SAVE THE DATE -- 4th annual Targets for Tourette's. Details to come.
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Support TSA of Texas While You Shop!
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Head to the Grocery Store!
 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. Shop at AmazonSmile AmazonSmile is a simple and automatic way for you to support your favorite charitable organization  every time you shop, at no cost to you. When you shop at smile.amazon.com, you'll find the exact same low prices, vast selection and convenient shopping experience as Amazon.com, with the added bonus that Amazon will donate a portion of the purchase price to your favorite charitable organization. The AmazonSmile Foundation will donate 0.5% of the purchase price from your eligible AmazonSmile purchases. Connect with AmazonSmile HERE. (or search Tourette Syndrome Association of Texas, EIN 74- 2198940) These are all incredibly easy ways to support TSA of Texas! Ask you family and friends to link their grocery cards or shop AmazonSmile also. There is NO COST to you to do this and TSA truly appreciates every penny we receive!
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TSA of Texas -- Out and About
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Michael Conway (middle) and representatives of JSC-SBS.
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Michael Conway, TSA of Texas President and Camp du Ballon Rouge Director, was presented with a $1,500.00 check for Tri for Tourette's from his running club, the JSC-SBS.
This generous donation will go directly to getting more Texas kids to Camp du Ballon Rouge. Thanks for your super support, JSC-SBS!
The Lubbock Support Group put on their sneakers and TSA shirts and walked for TS! The June 7 event was held at Miller Park and brought new awareness of and facts about Tourette's to many. Thanks to Support Group leader Pam for organizing the walk!
Summertime is FUN time for our TSA of Texas families! Summer parties were held in Houston, Fort Worth and San Antonio, providing a cool break and a way to keep in touch with friends!
See more photos on our Facebook page, under Albums. Be sure to "Like" Tourette Texas!
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"Good News" from Our Families
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 | | Tim Brennan |
Tim Brennan has written a book called "About Teddy: A story about Tourette's Syndrome". Hoping to raise awareness about TS at an early age, the book is targeted for 5-8 year olds. This book should raise awareness about TS, and possible curtail bullying! The book can be purchase at BarnesandNoble.com, Amazon.com, and Tatepublishing.com.
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Hunter in "Indian Idol"
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Hunter Courts of Port Neches won the "Indian Idol" talent contest, at his
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Hunter in "The Producers" with mom Cindy
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school this past Tuesday. He sang "Bring Him Home" from Les Miserables. Currently, Hunter is appearing in The Producers. Hunter also performed at the TSA of Texas Gala this past January, bringing the audience to their feet with "My Way." Mom Cindy reports that speaking and singing at Gala and that the positive responses he received meant the world to him.
Adam Farris, formerly of Houston, is doing very well in North Carolina. Adam has been living in his
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Adam and Suzanna
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own apartment for 2 months and his goal is to become financially independent. Adam also is the Executive Director of a non-profit organization called Ability Shirts. Adam is living life to the fullest , but would like to come back to Texas one day.
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Kylie at her "eyeball" party
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Kylie Ellis, age 10, of Pasadena, (who has TS) just completed 4 1/2 months of vision therapy to correct issues she was having. The therapy required much concentration from Kylie and had to be done 5 times per week.
Her parents were so proud of Kylie's hard work, they held an "eyeball party" to celebrate the therapy's completion!
 | | Henry Hamre |
Henry Hamre (age 12) from Flower Mound, TX joined his middle school's archery team this last school year. He competed on the school's A team as a 6th grader. They were named Texas State Champions and placed 2nd at Nationals. Henry ranked 3rd among 6th grade boys in the state of Texas! We are so proud of his hard work and focus!
Alison Hossner will be attending Tyler Junior College full time this Fall Semester!
Scott Jacoby is our FIRST person to sign up at Reason2Race to support TSA. Scott will participate in the December 14 metroPCS Dallas Marathon event. Read about Scott and DONATE to his efforts HERE. Thanks, Scott, for your support of TSA of Texas!
The Lunde family of The Woodlands have had a great summer! Joshua (11) and Jackson (10) have attended lots of camps and church activities, keeping the whole family busy. Their best experience was going to Disney world. The past school year was tough, but the summer has been awesome! Tyler Morris, TSA of Texas Youth Ambassador, graduated from Elkins HS Engineering academy June 6th and will be off to Rose Hulman the #1 ranked engineering college in the US this August and will major in electrical engineering. He completed a year long internship at Texas Instruments his senior year and is currently employed at BDP engineering enjoying doing Autocad drawings and learning all about real word deadlines!
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Jackson visits the Goats!
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This year, Jackson Hatcher (11 years, Southlake Texas) had a great school year. An in depth project for Black History month, Jackson created a paper, and Power Point project on Sojourner Truth, a woman of note for her life born into slavery, and activism for both freedom from slavery, and women's rights. He gave a lovely, and heartfelt presentation to the class and visitors. Proud of his research, and confident in front of the class, Jackson was an engaging and relaxed speaker. Montessori education has been an incredible gift to our family. We are truly thankful to have taken that road with our children. For spring break, we enjoyed our time in Maui, where we sometimes vacation. This year, Jackson zip lined Haleakala above the canopy (a  | |
Jackson zip-lining
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rare and adventuresome feat for a 5th grader I would say), bonded with goats, and with his little brother's instigation, enjoyed the hotel elevators in a way that only  | |
Elevator Fun
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boys can (floor by floor by floor...).
Recently Jackson expressed that he wants to travel the world, to see every place that he can, to "experience the culture, food, and life of this entire planet." I couldn't be more proud, says Mom Leslie.
Tristan Perez from Corpus Christi Texas is age 13 and going into 8th grade in the fall. He and his brother Hunter are both very active in the running and triathlon world in Texas. Here is an update on their amazing accomplishments so far this year:
Tristan has completed 2 half marathons this year, starting in January with the Aramco Houston Half Marathon, where he had his PR time of 1 hour 27 mins and 50 seconds. He also completed the Sugar Land Half Marathon in March, with a finish second in his age group [brother Hunter was ahead of him!] Tristan has also competed in several local 10 K and 5k events, with another PR of 39 mins and 10 seconds for his 10 K.
He is now in triathlon season and has competed in the Wet and Wild Triathlon in Corpus Christi Triathlon, Color Triathlon in Fulsher, the Windcrest Triathlon in San Antonio, the Toro Kids Triathlon in Cedar Park, and the Saxet Lake Triathlon in Victoria, Texas . In all these triathlons, he is always on the podium for his age group for either 1st , 2nd or 3rd. [He does have to compete with his brother who is at times his main competition!]
Today we just got back from competing in the Memorial Herman Sugar Land Triathlon where Hunter once again was on the podium in 1st place for his age group.[ Hunter was in 2nd place!] There were over 560 participants and he finished 15th overall!
Tristan is a member of a local running club for kids called Elite Feet; he swims on a local swim team called the Fast F.R.O.G.S; and has just joined a kids triathlon club in Victoria Texas.
Tristan was diagnosed with Tourette syndrome at age 7. He finds that triathlon and running have been a great outlet for his energy!
On top of all this he is a straight A student at his local school!
 | | Jackson Paulson |
This was Jackson Paulson's second year to attend Camp Twitch and Shout in Atlanta, GA. He made great friends and he fished, canoed, climbed a rock wall, zip lined, swam, went horse back riding, did archery (his favorite thing!) and went to a dance. He was happy to see his mom at the airport when she picked him up, but he did tell me, "I love you mom, but I miss camp!"
Mom Tonya says, "My son has echolalia & echopraxia so when I pick him up at the airport from being with other children with tourettes for a week it is always interesting to see what new tics he picks up. With Jackson we always get more then a T-shirt from Camp Twitch & Shout."
"Jackson is also looking forward to Camp du Ballon Rouge in September! I think it is so nice for the these kids to be together and just be able to be themselves without worrying about people judging or having to explain their condition. It is truly a safe haven for them. For the teenagers a place without judgment is a God-send!" Jackson is also going to be in documentary about Tourette's that will air on ABC News in about 8 weeks. We will keep you posted on air-dates!
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Samantha Ramsey
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10 year old Samantha Ramsey was in her first musical theatre production this summer. She was in Cypress Academy of Performing Arts production of Shrek the Musical. It was a wonderful experience for her and she had so much fun playing the part of Mad Hatter. Over 175 children auditioned in the spring, but only a little over 80 were cast. We were so proud of Samantha as this was her very first audition and she had to sing solos and read
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Samantha "Mad Hatter"
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lines. :) Getting past her tics and anxiety issues must have been difficult, but she wanted this so badly! She plans to audition again for the Wizard of Oz in August.
CAPA put on four wonderful performances the last weekend in June at Cy-Woods theatre in Cypress. They had worked so hard for months and it really payed off! The theatre holds over 800 people and the play was enjoyed by all.
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Joey Robrahn
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Joey Robrahn is now 14. He started his first job thanks to my dog groomer
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Joey Robrahn
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at GIGI pet grooming. We moved to Granbury last July, and the beginning of the school year was hard for him, but he is so out-going that eventually kids got used to his tics and he now has a lot of friends. Its became a great move for us. He is now at camp twitch and shout in Georgia, he goes to a friends house before camp who he met from camp and his parents take them both to camp. He says he is lucky to have Tourette's because if he was like everyone else he wouldn't be doing all the stuff he does. He wants to become a camp counselor when he is of age. He loves to sing and is very good at it; he is on you-tube under Joey Robrahn. Love the TS community!!
Landon Rosenbrock, 18, recently graduated and got his driving license. He went to The Texas Normal Singing School, which is geared toward adults who wish to improve their song leading abilities and worship leadership skills in the church. The school is held at ACU each year and taught by professors from all over the United States and world. Each year persons enrolled receive 50 hours of training. This was Landon's 4th year to attend. He finished the program receiving a certification in Worship Leadership.
Skyler Rosenbrock, recently completed 5th grade. He received numerous awards which included the highest average in math, and an award for received advanced performance in all three subjects of the STARR test.
Laura Spencer survived the Spring semester and continues to attend Lamar State College Port Arthur!
Matthew Spencer, Laura's brother, was recognized for earning his Eagle Scout rank at an Eagle Scout Court of Honor in May. He also graduated from Port Neches - Groves High School in May. He will be attending Lamar University and majoring in Mechanical Engineering.
Diann Taylor of Garland and the Dallas/North Texas support group gave a talk on Tourette Syndrome to 100 school nurses in GISD and heard within a few days from a nurse who now recognized that one of her students likely had undiagnosed TS. Diann has joined Toastmasters to continue to improve on her speaking skills.
Sara Warren was diagnosed with T.S. at age 7. Despite having T.S. and OCD she shares her love for singing. She hopes one day to try out for "American Idol." She also runs cross country and plays Lacrosse. She proudly shares her T.S diagnosis and embraces who she is.
Thanks for sharing all the good news. We love to see it! http://youtu.be/rlXflIzeVag
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Umpire Sean Wolfson
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Sean Wolfson from Sugar Land TX was selected to umpire full time this summer
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Sean makes the call!
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in the Pecos League of Professional baseball, a feat he has been striving for for over 17 years. Sean says, " The only way you can lose in baseball and in life is if you quit. I don't know how to quit." Sean educates about TS when he gets the opportunity while on the road. Check out his interview at www.bigbendcourier.com " Don't Forget the Umps."
NO TIC TOO TOUGH!
The Yost family of Katy, TX went on vacation in Georgia. Daughter Katy reports they visited the Georgia Aquarium in Atlanta and the Coke-a-Cola exhibit this week. Awesome!
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Katy at the Coke Museum
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Katy at the Aquarium
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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 9/30/14.
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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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