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Spring 2016
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Volume 10, Issue 2
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Tourette Awareness Month
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Spread the word to others or learn more yourself!
Visit our LIBRARY page for important downloads to share with family and educators.
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Helping Children and Changing Lives
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 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.
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From The Executive Director
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|  | | Sheryl Kadmon | |
In the spirit of Tourette Awareness, we share with you a few of the amazing folks who help support Tourette Texas! The following remarks were made by Sheryl Kadmon, Tourette Texas Executive Director, at our January 28 Gala Evening: Stars at Night, Big & Bright.
We are here this evening to honor the children and families who struggle each day to live with Tourette's syndrome.
It is not a simple disorder to live with. In addition to the hallmark movements and noises, most are affected with obsessive-compulsive disorder, attention-deficit-hyperactivity disorder and resultant school and social issues.
We will hear from a few of these heroes shortly. (NOTE: Read their stories further below)
In this ballroom tonight, we are all strengthened by the collective family of heroes present who refuse to be defined by their symptoms and have instead chosen a life of success and service.
I would like to recognize Michael Conway - the current President of Tourette Texas. He was not diagnosed until adulthood. In spite of his symptoms, he is the co-founder of Camp du Ballon Rouge as well as its beloved Camp Director. He is also the founder of Tri for Tourette and Trails for Tourette, both foundations set up to raise money so children in Texas may attend Camp without cost.
And Jamie Blassingame, a licensed school psychologist and Tourette Support Group co-leader, whose almost unbearable symptoms - again diagnosed in adulthood - do not impair nor prevent her staunch advocacy and support of schoolchildren every single day.
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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 Tourette's and their siblings while adults meet separately. Tourette Texas support groups in:
To start a support group in your area, please contact us toll free at 866-894-8686.
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| Tourette Family Stories |
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| | Hayden Performing |
Haden Blanchard is a 10 year old dancer from Sour Lake, Texas. This is Haden's 6th year dancing in the Beaumont area and this year he was invited to dance with the national champion IRULE Dance Studio in Beaumont. Most of his dance friends don't realize Haden has Tourette Syndrome because he feels most comfortable in a studio or performing so he doesn't tic very often. We were honored to have Haden perform a contemporary/ballet piece to "Electricity" from the musical "Billy Elliot" at Gala.
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| | | Hayden and Family | |
Thank you for letting me dance for you. I love dancing and it makes me feel good about myself, but I didn't always feel very good about myself. In school, kids thought I was weird because I was so hyper and moved a lot. The teachers didn't help at all. They didn't like me very much and they only did the accommodations required after meetings with the principal. I was always in trouble and rarely got recess time. The principal told my parents that it didn't matter that I had a disability; I would still be punished with pops or in-school-suspension in a room with loud copiers and ringing phones that was so loud it startled me. If I turned or had to stand I was yelled at by the secretaries in charge of me. I think the school would have been a better place for me if they had understood the way my brain works. My Mom and Dad were able to call Tourette Texas to learn about my school needs. Thank you for supporting the Tourette Association - Texas Chapter and please keep supporting kids like me so that more schools and families can learn about what we need.
Taylor and Denise Lovshe: daughter and mother
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| | Taylor and Denise Lovshe |
Hi, my name is Taylor Lovshe, I am 22 years old and I have Tourette Syndrome. I was diagnosed at the age of 5. I'd be lying if I said it was easy to get to where I am today. I had to overcome a lot of obstacles and challenges. I found that school was one of my hardest challenges. I was teased because of my tics and I gained weight because of my medication.
I wanted to learn and I like to learn new things but my tics tended to prevent me from learning as fast. My mom is amazing. She was very involved with the school and my teachers. She made sure they were up to date and understood my Tourette's. It helped just knowing she was on my side and my voice when I was too scared to have one. Another thing that was challenging for me was that I was emotionally behind for my age. I didn't want to believe I was behind, no one would so that was an internal struggle I had to overcome as well. As I got older I was able to come up with coping strategies which helped me to learn to control my tics. I wasn't able to stop them all the way, but having those coping skills helped me not tic quite as much.
Texas Youth Ambassadors Ian Henry and Reese Wilson
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| | | Reese Wilson and Ian Henry | |
Ian Henry
My name is Ian Henry, and I would like to thank you all for attending this year's annual gala. I am extremely grateful for all of your support towards Tourette syndrome.
Tourette syndrome is a neurological brain disorder that causes tics. Not the bloodsucking kind of tick, but an involuntary movement or sound. Tics range from small, minor ones, like mine, to large, and hugely disruptive ones, like blurting out swear words. I have a friend who has that, and it sucks. He can't go into any restaurants, movie theaters, or other public areas because he might offend someone with a swear word. To help kids with Tourette, they take medication, and prescription drugs, but this requires a diagnosis, something I did not have for the longest time.
When I was younger, I had a LOT of behavioral issues, and everybody just thought that I liked being in trouble. But I didn't. One thing we noticed was that I had a blinking problem. I was non-stop blinking. My parents took me to an eye doctor, but he just said I had allergies. So we went to an allergist, but he said that I was doing it on purpose to annoy everyone. But I couldn't help it. After a while of searching for a solution, one practitioner said that I might have Tourette syndrome. We looked into that idea, and as it turned out, he was right. Since then we have been further educating ourselves about Tourette syndrome.
Reese Wilson
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| | | Wilson Family | |
The majority of people living with Tourette's syndrome (TS) and other tic disorders will lead productive lives. The media usually only showcase the most severe and rare cases, thus making it more difficult for people with TS to be accepted. Usually, there are coexisting conditions that make learning more challenging, but this doesn't mean that people with TS are below average intelligence or incapable of living successful lives.
TS is a neurological disorder characterized by repetitive, stereotyped, involuntary movements and vocalizations called tics. Symptoms usually appear in early childhood with the worst peaking in early teens. So it's at its worst when kids are usually at their worst in terms of acceptance and self-confidence. No kids should feel isolated or alone especially because of something that's completely out of his or her control. I applied to become an ambassador to help raise awareness, but also to be a friend and support to other kids that need me.
It is a huge honor being selected as the State of Texas Youth Ambassador for the National Tourette Association. I've had the privilege of meeting some of the best people and have made friends from all over the US. We are charged with raising awareness, spreading acceptance and even fund-raising for our state's Chapter. The Tourette Association - Texas Chapter supports kids and families from all over Texas. They provide advocacy, support groups, In-Service and in some cases even financial support for medical visits.
Reese and his grandfather Virgil Yoaum hosted an amazing Takeaway Tourette golf tournament.
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Kendra Scott Shopping Event
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Join Texas Youth Ambassador REESE WILSON for a fund-raising event
in honor of Tourette Awareness Month.
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Photo Gallery
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January 28 -- Stars at Night GALA
March 4-6: 14th Annual Camp du Ballon Rouge
 
April 15 -- 5th Annual Targets for Tourette's     
FUN PHOTOS!
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Adam wears TEAL HAIR for Awareness
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Victor graduates in San Antonio
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See MORE PHOTOS on our Facebook Page under ALBUMS
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| BLOG: tourettewife by Kate Knapek |
Ever wonder what it is like to be married to someone with #Tourettes?
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| | Edward and Kate |
My Story...
Meeting my "Tic-y" Husband
I first saw Edward during Teacher In-Service week at my new school. He was the PE Coach at the parochial school where I was teaching. I could tell right away that he had a lot of energy and was a positive person.
We were about to get started with a big meeting and Edward kept saying, "Cool, Cool! Good Good!" and was bouncing his knee continuously. My first thought was, 'Oh my goodness, something really cool is about to happen and this guy knows it!!' As the meeting went on, Nothing cool, good, or exciting happened. I then realized that there was more to Edward than just being enthusiastic. (And, I was a little upset that he gave me the wrong idea about the meeting... )
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Lessons from Parenting
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| | | Leslie Rhode | |
Leslie Rhode, one of our Austin Support Group members, was recently published by a national website. Congrats, Leslie!
Leslie is a mom of two and works as a communications consultant and freelance journalist, including for KXAN-TV/Austin.
6 Things I've Learned as the Parent of a Child
With Tourette Syndrome
My son has Tourette syndrome (TS), a neurobehavioral movement disorder causing motor movements, or tics, he cannot control. And that's just what is obviously visible on the outside. Many children with TS deal with obsessive-compulsive disorder, attention deficit hyperactivity disorder, and various learning disabilities. The Tourette Syndrome Association of Texas estimates up to one in 33 children have TS in some form. Even so, it's widely misunderstood, and we have much more to learn about what causes TS and treatments.
I would never try to speak for my son about what it feels like to live with TS, but I can tell you, after years of processing this diagnosis, what Tourette syndrome has taught me. Maybe all parents could learn something from this part of my story.
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| | Leslie's son |
1. Most of the time it's best to "call it like it is."
Be as honest with your children as you can. If they learn mom or dad has rough dark days, too, they may be better able to manage theirs. They will also more likely want to talk to you about the difficult moments. I believe we should all learn to laugh at our personal challenges, because they don't define us. However, sometimes those challenges, like Tourette syndrome, can make us want to throw up our hands, scream and cry. It's not easy. Let's just call it like it is.
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Alex and Ani Shopping Event
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Join us for a TEAL for TICS Shopping Event 
Wednesday, June 8
ALEX AND ANI - Baybrook
700 Baybrook Mall, Suite A111, Friendswood 77546
6:30pm to 9:00pm
Lite Bites and refreshments will be provided. A portion of sales during the event will be donated to the Texas Chapter.
Hosted by Brenda Olivarez, mother of a son with Tourette's and Owner-Operator of StudioB and EDS at Lanza Healing Haircare in LaPorte
For more information and to RSVP: brenda@brendaolivarez.com
Brenda's Story:
When my son was diagnosed with Tourette Syndrome, I was completely lost. I knew nothing about it and did not know where to start. I went to several libraries around the city searching for answers and found that there was not much information. With organizations such as Tourette Association of Texas, it makes life for the patient as well as the family members to have full access to the resources needed, as well as events and support groups!
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Center of Excellence
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The national Tourette Association of America recently designated the Baylor College of Medicine Parkinson's Disease Center and Movement Disorders Clinic, founded and director by Joseph Jankovic, MD, Professor of Neurology Distinguished Chair in Movement Disorders, as the Center of Excellence (COE).
The TAA-COE designation is an important honor acknowledging the high standard of care, research, education/awareness, and outreach/advocacy provided by the Baylor team. The TAA-COE is located in a new facility in the east side of the Texas Medical Center, Baylor St. Luke's Medical Center at the McNair Campus, 7200 Cambridge, 9th Floor, Suite 9A www.jankovic.org
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Save the Date
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2016 EDUCATIONAL PRESENTATIONS ON TOURETTE'S:
 Back to SCHOOL often equals Back to STRESS for children with Tourette's, their parents and their teachers. To the uniformed, symptoms of Tourette's seem purposefully disruptive and "disobedient" to teachers. Additionally, tics and associated disorders such as Obsessive Compulsive Disorder, Attention Deficit Hyperactivity Disorder, and/or learning disabilities often keep a child from performing to full potential.
Sheryl Kadmon, Executive Director of the Tourette Association of Texas, can help you and others understand this often baffling disorder and help you advocate successfully for your child in school. 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 TS, family, physicians, nurses, school personnel and teachers - anyone with an interest in learning about TS. Visit our website (www.TouretteTexas.org) and click on the Support Group TAB for specific location/time details for each city or email TouretteTexas@aol.com for details.
Tuesday, August 2 San Antonio
Thursday, August 4 Bryan/College Station
Wednesday, August 10 Katy/West Houston/Sugar Land
Thursday, August 11 Woodlands/North Houston
Saturday, August 13 Tyler/Longview
Saturday, September 10 Dallas AND Fort Worth
Tuesday, October 4 Austin
Learn more about Texas Support Groups HERE.
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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.
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.
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Support Tourette Texas While You Shop!
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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!
 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!
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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. |
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How Can Tourette Texas Help You?
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Tourette 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 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.
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How Can You Help Tourette Texas?
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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!
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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)
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MAKING PAYROLL CONTRIBUTIONS via Community Health Charities. CITY OF HOUSTON EMPLOYEES - use code #1314.
All donations are tax deductible. Learn More>>
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