| Summer 2010 |
Vol 4, Issue 2 |
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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 |
| Tourette's syndrome is a neurobehavioral (brain-based) movement disorder characterized by motor and vocal tics. Beginning in childhood, it causes those affected to make movements and noises they cannot control. Additionally, many are plagued by obsessive-compulsive disorder, attention deficit hyperactivity disorder, oppositional behavior and other disorders. 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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URGENT: Help TSA of Texas Receive $20,000 |
 Chase is giving $20,000 to charities who receive the top 200 votes on Facebook.
Please VOTE for TSA of Texas!!
Contest Ends Monday (July 12) at Noon!
Even if You Voted for TSA of Texas in November, You Must Now Vote Again for Your Vote to Count in this Contest!
We are currently 200 votes behind, but if everyone who receives this takes just a minute to vote we could win this!
JUST CLICK HERE TO VOTE!
Look for the Richmond, Texas designation to ensure you're voting for the Texas Chapter.
Please forward this message to all of your friends, family and neighbors and help TSA of Texas receive $20,000!!!!
Should you have ANY questions or problems, contact Cindy at TouretteTexas@aol.org.
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| Texas Hotlines |
| Houston: 281-238-8096
Toll Free: 866-894-8686
Emergency Pager: 800-209-0796
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| Texas Support Groups | | TSA of Texas has support groups in Austin, Dallas, Fort Worth, East Texas/Golden Triangle, Gulf Coast, Katy, Lubbock, North Houston and San Antonio. Learn More>>. To start a support group in your area, please contact us toll free at 866-894-8686. |
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Save These Dates! |
Austin - Swimming and pizza at the Matcha's on Friday, July 23 at 6:00 pm. Please bring
Dallas - Bowling, Laser Tag, pizza and more on August 14th at 9:00 am at Main Event,
Fort Worth - Picnic and swimming on Saturday, July 21 at Burger's Lake from 9:00 am to
Houston - Swimming and more on July 15th from 7:00 pm to 9:00 pm at Cinco Ranch
Waterpark in Katy. Please bring a snack to share. RSVP to Barbara
Austin - October 5
Dallas - August 12
Fort Worth - September 11
Gulf Coast - July 28
Katy - August 11
Lubbock - August 8
San Antonio - August 3
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- September 19 - Astros Baseball Game. FREE tickets; 1:05 pm start against the Cincinnati Reds. RSVP to Cindy at TouretteTexas@aol.com.
- October 18 - 16th Annual Tee-Off for Tourette. See article below for more information.
- 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.
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US Goal Keeper Tim Howard Shuts Out TS |
 We all know that TS can increase the risk of learning, behavioral and social challenges, and as a result, it can really take a toll on self-image. But for Tim Howard - the goalkeeper for the U.S. soccer team in this year's World Cup tournament - it's a disorder that he has never let get in the way of his dreams. Howard was diagnosed with Tourette's when he was 9 years old after his mother noticed symptoms of obsessive-compulsive disorder, which is a neurobehavioral problem often associated with the syndrome. Growing up, Howard immersed himself in sports, playing basketball and soccer, and excelled at both. He spent his teen years playing on U.S. youth teams, and was 19 when he made his debut with Major League Soccer. In his third full season, he was voted MLS goalkeeper of the year, and remains the youngest player ever to receive the honor. Two years later, Howard was on his way to England to play for Manchester United - one of the most successful clubs in history. For the full Fox News article, click here. Click here to read Tim Howard's impressive bio on www.ussoccer.com. |
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Discovery of Rare Genetic Mutation Could Help Battle TS |
 The underlying cause in the majority of cases of Tourette Syndrome remains elusive. However, in many families with a history of the disorder, there is compelling evidence to suggest that the inheritance of certain genes causes or contributes to the development of the condition. Dr. Matthew State and colleagues at the Yale School of Medicine have published a research study in The New England Journal of Medicine (see press release below) in which they have identified a defect in a gene (called L-histidine decarboxylase, HDC) that is responsible for the development of TS in two generations of a family (a father and eight of his off-spring). However, this gene defect was not found in hundreds of other families with TS whose DNA was analyzed in the same study, and therefore, the HDC gene defect is a rare cause of TS.
However, the discovery could nevertheless be a key development in our understanding of the brain changes that occur in TS, irrespective of the cause. HDC is important for the production of histamine which is well known for its role in allergies, but is also present in the brain where it is involved in the communications between nerve cells. The HDC gene defect in the family with TS appears to interfere with the production and levels of histamine in certain parts of the brain. This finding raises the possibility that drugs that can alter the histamine systems in the brain might have therapeutic benefit in TS. Thus, the study published by Dr. State and his colleagues is highly significant in that it could open new avenues of research and discovery in the disorder. |
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Yale Press Release | |
May 5, 2010 - New Haven, Conn. - A single, very unusual family with Tourette syndrome (TS) has led Yale School of Medicine researchers to identify a rare mutation in a gene that is required to produce histamine. The finding provides a new framework to understand many years of data on the role of histamine function in the brain and points to a potentially novel approach to treatment of tics and Tourette.
The study is published in the May 6 issue of New England Journal of Medicine by a team led by Matthew State, M.D., the Donald J. Cohen Associate Professor in the Yale Child Study Center and in the Departments of Psychiatry and Genetics, and co-director of the Yale Program on Neurogenetics.
TS is a neurological disorder characterized by tics-involuntary, rapid, sudden movements or vocalizations that occur repeatedly in the same way. Tics begin in mid-childhood and peak at the start of adolescence. TS is not life threatening, but can be disabling. Affected children and adults commonly have other neuropsychiatric disorders including ADHD, obsessive-compulsive disorder or depression.
Based on strong evidence that genes contribute to TS, the State lab has been searching for rare genetic mutations causing TS for over a decade, in the hopes of gaining a better understanding of the cause of the disorder, and finding opportunities to develop more effective treatments. "Rare families have been used in a variety of other common conditions to help identify underlying mechanisms of disease and find new approaches to treatment," said first author and Yale post-doctoral fellow Adife-Gulhan Ercan Sencicek. "We thought we could use the same approach in Tourette syndrome."
State and his team found a family with TS with a rare mutation in a gene called 1-histidine de carboxylase (HDC). This gene makes a protein that is required for the production of histamine. Histamine is known more often for its role in allergic response, but it is an important neurotransmitter that influences a variety of brain functions.
The father and all eight offspring were diagnosed with TS. The mother and her family did not have the disorder. Two children and the father also had obsessive-compulsive disorder. The State lab took DNA samples from all family members, found the one region of the genome that all affected individuals shared, and then identified a rare mutation in HDC within this region, which resulted in the mutated protein losing its function.
State said past work on brain histamine by other labs shows that mice with low levels are more prone to repetitive behaviors that are similar to human tics, and that increasing brain histamine reverses this problem.
"The opportunity to go directly from a rare genetic finding to a trial of a new approach to treatment in a neuropsychiatric disorder is very unusual," said State. "We were lucky to happen across a gene pointing to a well-studied area in neuroscience. There are several new medications in development that increase the release of brain histamine. Based on this genetic finding, these compounds would be good candidates for new treatments for Tourette."
Other Yale authors on the study included Althea Stillman, Ananda Ghosh, Kaya Bilguvar, M.D, Thomas Abbott, Abhu Gupta, M.D., Robert King, M.D., Erin Loring, Katsuhito Yasuno, Thomas Fernandez, M.D., Stephan Sanders, M.D., Angeliki Louvi, Judy Cho, M.D., Shrikant Mane, Christopher Colangelo, Thomas Biederer, Richard Lifton, M.D., and Murat Gunel, M.D.
Citation: New England Journal of Medicine Vol. 362, No. 18 (May 6, 2010) |
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Executive Function: Overview and Tips for Management |
The latest TSA education audio presentation is online and available to you here. The presenter is Sarah Crowther, M.Ed., Director of Student Success and First-Year Programming at Culver-Stockton College located in Canton, Missouri.
The information provided in this material was supported by Grant/Cooperative Agreement Number DD000343 from the 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. |
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Five Top Tips to Organize for School Success |
 by Ann Dolin, M.Ed.
Organize Space - Keep all supplies in one location. A shower caddy is a great idea because it is portable with plenty of upright space for paper, markers, rulers, etc. For older students - at the end of each quarter, encourage your child to clean out his binder, filing old tests, quizzes, or other important papers in a hanging file folder.
Simplify the Binder - Many students struggle to maintain an organized binder. Consider using a Case-It binder with a built-in accordion folder. Label the folder's tabs with each subject name. Now, students don't have to hole punch and file. Each paper can be neatly tucked behind the subject tab.
Prioritize Daily Assignments - Organization isn't just about materials; it's about time too! Help your child number his assignments in the order in which they will be completed (1,2,3). To get over the hump of getting started, begin with the easiest assignment first.
Plan Long-Term Assignments - Limit procrastination by encouraging your child to record the final due date in his planner and the incremental steps leading to it. For example, "essay due" is recorded on Friday, but on Wednesday and Thursday, he writes "complete rough draft" and "edit and proof". These mini due dates become part of the daily assignment list.
Praise - It's easy to notice when materials are disorganized, but parents can create greater change by remarking on what's right instead of what isn't. When you catch your child putting papers in the correct folder when he doesn't typically do so, praise him. By noticing small changes, you'll help to increase motivation.
Ann Dolin, M.Ed. is the President and Director of Educational Connections. She holds a B.A. in Child Psychology/Elementary Education and a Master's degree in Special Education, with a concentration in Learning Disabilities, from Boston College. Ann is a former Fairfax County, VA public school teacher with over 15 years of teaching and tutoring experience. After leaving FCPS in 1998, Ann founded Educational Connections as its only employee with the goal of providing individualized one-to-one instruction based on each student's learning style. Today, her company employs over 100 tutors, serves the entire metropolitan D.C. area, and has worked with over 2,000 students. |
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Important Changes Regarding Eligibility for 504 Plans |
by Kathy Giordano, TSA Education Specialist
On September 28, 2008, the "Americans with Disabilities Amendments Act of 2008" was signed into law. The amendments impact both the Americans with Disabilities Act (ADA) and the Rehabilitation Act of 1973 which includes Section 504. These amendments have changes that will directly influence the eligibility for 504 Plans for students with disabilities. The changes will simplify the eligibility process for students who have TS and/or related disorders. Click here for more information. |
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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.
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| It's Time to Update Your Kroger Bar Code! | |
Each year, the Kroger Neighbor to Neighbor program donates a percentage of $1 million to non-profit organizations, based upon each non-profit's earned contributions. However, a new Bar Code is required to be attached to your Kroger Share Card every year. Click here for the NEW Customer Letter Bar Code from Kroger. Print the letter and take it with you the next time you shop at Kroger. The cashier will scan your Kroger Plus Card and then scan the barcode on this letter and you will be enrolled thru 4/30/2011 (when we'll have a new letter with new barcode). The letter with bar code needs to only be scanned one time. TSA of Texas will then be eligible to receive a percentage of money based against your purchases. Please note that this program replaces the Kroger Share Card program, which no longer exists. Even if you have already registered TSA of Texas via your Share Card, you MUST re-link us in the Neighbor to Neighbor program. Please email TouretteTexas@aol.com with any questions or to have the Kroger letter mailed to you. Do you shop at Randall's? To join the Randall's charitable giving program, ask the checker to link your Randall's Remarkable Card to charity number 2493 (tell them once and it is permanently linked). Thanks for your support of the Tourette Syndrome Association of Texas! |
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16th Annual Tee-Off forTourette Coming Soon | |
 SAVE THE DATE!
Monday, October 18, 2010
Canongate at The Woodlands - Panther Trail Course
2311 North Millbend Drive
The Woodlands, TX 77380
Click here for more information. |
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Speaker's Bureau Increases Awareness | |
By Emily Stark
 When I receive a telephone call or an email from an individual wanting to know how they can have someone come out to speak about Tourette's syndrome (TS), I get excited. I used to solicit organizations and beg them to let me come and speak; now they call me. I also get excited because I know we, as a group, must be doing something right to get the exposure necessary for interested parties to be calling us now! That means since the Speakers Bureau (SB) first started in that little room in Alexandria, Virginia some four plus years ago, with just 14 people, we're advancing. We're getting the word out and TS, slowly but surely, is getting recognized. Although times have been hard trying to raise funds these last couple of years, our rate of exposure has grown considerably, partly due to the fact that more and more people are publicly recognizing TS as more than just the "cursing disease." By now, most of us have viewed the HBO documentary "I Have Tourette's But Tourette's Doesn't Have Me," as well as Brad Cohen's very special book and Hallmark Hall of Fame movie "Front of the Class." And with best selling writer James Patterson co-authoring "Against Medical Advice" with his friend, Hal Friedman, we are all in a much better place with the public's perception of what TS is. When I begin a presentation, I am proud to say "Good Morning, My Name is Emily Stark and I have Tourette's syndrome." And then I begin...little stories about life with TS thrown in here and there amongst the facts, which helps those unfortunate "normals" to understand life as we live it (what is normal anyway?? - I'll let you know in another article if I ever find out!!). For me, Speaker's Bureau has presented a way to find out what my purpose in life is. I now know that all those little tests that are put before us during our lives are preparing us for that one moment. I stand up and tell people about TS to educate them, to ease their fears and to put them in our shoes for a little while so they can see life on the other side. It's not just about having TS, or explaining the facts, it's about helping others to understand that we can be just as "normal" as they are, if they will just relax and give us a chance. It's not something we choose to have in our lives, but since we do, why not make the best of it, and with a little education and a lot of humor, we can! As a member of SB, I have presented to Church Affiliated Groups, Nurse and Daycare Organizations, Students, Teachers, Administrators, Counselors, Corporate Employees, and countless others, and each time I speak, there is always at least one person listening who doesn't believe what I'm saying and they leave the room thinking TS is still just some made up disorder. BUT, for every one person who leaves the room feeling that way, I can see many, many more light bulbs going off over listeners' heads as they suddenly "get it." And that is my moment! That is when I say to myself "this is what it's all about, that's why I'm here, all those little tests were to make me stronger, to give me the courage to be up here in front of strangers!" The Speaker's Bureau has grown considerably since that first meeting. We now have 74 members in 37 states. And with the new release of the SB CD to enhance the facts about TS while we present, we'll be able to provide an even more comprehensive understanding of who we are and take the TS awareness level up a few notches. Next time you think you might know of someone (or a group of "someones") who might benefit from a presentation, let me know. I'm sure we can find someone in your area to present, and if not, I'll be there! My Name is Emily Stark, and I have Tourette's syndrome. "We recognize how vastly important it is for the child growing up with Tourette Syndrome to have an understanding and united support system with parents and teachers working together, so that these kids may have the best chance of emerging into adulthood with that all important sense of self-esteem." Susan Conners |
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Get HIPP |
 The Texas Health Insurance Premium Payment (HIPP) Program helps families pay for group health insurance if they meet certain criteria, including HIPP can help the whole family, even those without Medicaid. Family members who already get Medicaid can still receive Medicaid services not covered by the health insurance, go to doctors who take the group health insurance, and have their co-payments and deductibles paid for by Medicaid when they go to a doctor who takes Medicaid. Family members who do not get Medicaid might receive group health insurance coverage, if they qualify for HIPP. When a family qualifies for HIPP, Medicaid repays the family's insurance premiums.
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| Lone Star BMX Fundraiser - San Antonio |
 BMX Racers were busy in San Antonio the weekend of June 5th and 6th - and so was TSA of Texas! Michelle and Louis Silver chaired an awesome fundraiser at the Lone Star BMX Track to benefit the San Antonio TS Support Group. Korbin Vienne and his cousin R.J. Hernandez did a super job selling raffle tickets, while volunteers Ronda Gottlieb, Rodney Perrin, Keri Rodriguez, Walter Smith, Sheryl Kadmon, Jessica Kadmon and Cindy Sacks served brisket, burgers and sausage to the hungry crowds. Jessica also started the activities on Sunday with a stirring rendition of the National Anthem. Proceeds from the brisket sales and the fabulous raffle prizes raised nearly $2,000. Louis, your cooking is fabulous! Michelle, you did an amazing job! See below for a list of our great BMX supporters. |
| 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.
BMX Supporters and Contributors:
Michelle & Louis Silver
Debra & Rodney Perrin
Ronda Gottlieb
Cissy & Shon Essman
Shannon & Blaine Tupper
Robbie Balinger
Justin Smith
Cory & Billy Ross / Lone Star BMX
Vincent Gillette / Gillette Mechanical
Neesha & Robby Grubbs / Local Coffee
Roxanne & Roy Petree / Gabriel's
H&H Liquor
Derek Mick / Derek Mick Photography
Popeyes Luisiana Kitchen
PFG Temple
San Antonio Spurs
John Dulsky / Holy Trinity Catholic Church
Howard Smith / Action Bikes
Other Supporters:
Nell Ciacarelli / Champion Technology -- Tee-Off Putting Contest Sponsor
Jennifer Elfert - in honor of Jude Elfert
Kroger Neighbor to Neighbor Program
Winifred & Stephen Marsh - North Texas S/G
Lakeside Country Club Bingo
Deborah McKim
Dianne Migl
Trish Rubio |
| "Bonne Nouvelle" |
Amber Briggs of Dickinson (age 19) graduated from high school on June 4th. Hunter Courts (age 14) has just been cast by Lamar State College - Port Arthur and Port Arthur Little Theatre's 16th Joint Summer Musical "The Sound of Music." Hunter will play the role of Frederick. Demitri Crawley (age 16) recently completed the end-of-year Stanford test and was acknowledged to comprehend and perform at 12th grade and Freshman college levels. He is also taking acting, singing and dancing classes, which not only assist with his confidence and personal growth, but provide him with much fun and social activity. Zachary Curran of Denton (age 18) recently graduated from Denton High School and is planning to attend college in the fall. In June, he was awarded Boy Scouts of America's highest rank of Eagle Scout. Zachary's Eagle Scout project was painting and labeling a 27 foot to scale map of the United States on the playground surface of Sam Houston Elementary. Timothy Gray of Amarillo (age 9) was commended on the math and reading TAKS tests. He also performed in his first piano recital on May 29th. Will Henderson of Lubbock (age 9) just finished the third grade earning a place on the "All A's" honor roll for the year. Will also completed requirements for his black belt in Tae Kwon Do in June. Rachel March of Plano (age 10) just finished 5th grade. She receives $20 for every 100% she receives on a report card. She recently carried a report card into the house yelling "You OWE me SIXTY bucks!!!" For three 100% grades, her parents were happy to pay up! Carlette Elise Martin (age 18) graduated from Jersey Village High School on June 6th. Her family and friends are extremely proud of her perseverance and will be there to support her as she begins Lone Star College this fall. Ryne Nardecchia of Spring (age 15), recently portrayed Friedrich Von Trapp in the Theatre Under the Stars production of "The Sound of Music." In July, he will perform in the lead role of Bobby Strong in the musical "Urinetown" at Oklahoma City University's summer musical theatre program. Ryne, a tenor, also received first place in May at the National Teachers of Singing competition. Garrick Nichols of Austin has been promoted to section leader of the Kealing Middle School wind ensemble band for his upcoming 8th grade year. In addition to playing the baritone in that band, Garrick has also been asked to join the jazz band as a trombonist. The wind ensemble band will be headed to Chicago in December for competition and Garrick is looking forward to the trip. Micah Osei of Houston (age 10) is doing fantastic in his Tae Kwon Do class. After only one month of training, he has earned his yellow belt. Landon Rosenbrock of Port Lavaca (age 14) placed first in a Bible Search Competition in Austin. Questions were over the first 14 chapters of the book of Acts. Landon Schaeffer graduated from Texas A&M University College Station on May 14th with a degree in Geography and a minor in Earth Science. He has an agent and is pursuing his dream of Weather Forecasting. Matt Shoenfeld of Saginaw (age 10) completed 5th grade with perfect attendance, A/B honor roll, exemplary citizenship and the advanced reading award. This summer he is working on climbing rock walls and practicing his swimming skills. Austin Weber of Katy (age 14) earned the High Honor Roll award and was named MVP of the TimberWolf basketball team at WoodCreek Junior High.
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? |
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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:
- 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>> | |
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