||Vol 2, Issue 4 |
Your "Good News" from TSA of Texas |
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. |
From the Desk of the President: Flying
by Daryl Brister
We never know what each day will bring. People face the challenges of each day in different ways. Sometimes we seem to fly over the top of those challenges. At other times, these trials roll right over the top of us with a force that presses us down.
These challenges come first and foremost in our families - children struggling with TS, ADHD, or OCD; teenagers wanting to be more like other teenagers instead of just being their wonderful selves. Or the task of managing family matters while trying to "look and act" normal (I'm still looking for the definition of "Normal"). There are also the challenges of working so bills can be paid, putting some money aside for savings (ha!), and hopefully, having a little extra left over to go to the movies once in a while. Let's not forget about those pressures at work each day. Maybe the difficulty comes in the form of a supervisor or manager asking you to do more with less without any extra resources. It is just expected. As if that was not enough to deal with, there are also the challenges of maintaining relationships with others. Where does it end?
That is a very good question to which the answer is a bit different for each person who is reading this. As I started this article out, "People face the challenges of each day in different ways," the key to remember is that we all have our highs and lows each day. On a personal note, some days I face challenges head on! On other days, I really don't want to even get out of bed, but I know that I must and so I begin to struggle through my day. However, the goal is always to try to start each day new and not let my mind dwell on things that "might happen" or "what if?" As I wrote in the previous newsletter, I would have never seen myself where I'm at today, but here I am. How did that happen? I think part of it is starting each day new, one step at a time. Another part is just working hard to "press on." BUT - there are those rare days that I fly...and the view is amazing! What do I mean by that? I don't know that I can explain it; other than to say that on those days I seem to soar above the challenges. WOW!
These challenges we face each day are not meant to be faced alone. Without my wife, two sons, church family, TSA of Texas family, friends, co-workers, and the list goes on, the days would be tougher to face. Have you ever been amazed by the power of a kind word? I have found it to be like a gentle breeze that picks me up. With that in view, we should make the time to let those around us know we're there and appreciate them. We can't forget we are here to support each other, especially when the tough "challenge" days happen. With this in mind, the TSA of Texas Board appreciates all you do to support those with TS and those affected by TS. Even if you only tell one child with TS that you love them regardless... then today is your day to FLY! Enjoy the view.
Toll Free: 866-894-8686
Emergency Pager: 800-209-0796
|Texas Support Groups|
|TSA of Texas has support groups in Austin, Channelview, Dallas, Fort Worth, East Texas/Golden Triangle, Katy, North Houston and San Antonio. Learn More>>. To start a support group in your area, please contact Sheryl Kadmon, Executive Director of TSA of Texas, at 281-238-8096 or toll free at 866-894-8686. |
Save These Dates!
- March 20 - 22 - du Ballon Rouge Children's Weekend
- April 25 - Meet author Brad Cohen in Houston. Watch the website for more information.
- May 15 - June 15 - TSA Awareness Month
- May 16 - An Evening of Jazz - I Groove to my Own Move! This fundraiser benefits the North Texas TS Support Group and TSA of Texas.
- June 12 - 13 - TSA 5th International Scientific Symposium in New York City. Click here for more information.
- January 2010 - Medical Conference in Houston at the Baylor College of Medicine. Multi-accredited. Tracks for physicians, teachers, social workers and parents. More information to come soon.
|Action Alert: TS National Health Program|
This is an urgent issue which needs your immediate attention. TSA is calling on you to take to help secure continued funding for the Tourette Syndrome Public Health Education and Research Program at the Center for Disease Control and Prevention (CDC).
Congress has funded this program for the past five years. But in the month since Inauguration Day, Congress has begun to implement procedural changes that affects support among both Republican and Democratic Members. In addition to this challenge, the TS Community has lost two ardent Congressional Champions who rallied support for our community. Former Senator Hillary Rodham Clinton (D-NY) and Gordon Smith (R-OR) will not be circulating a "Dear Colleague Letter" on our behalf, since they are no longer Members of this Congress. Click here for more information. Click here to send an electronic message to your Representatives now.
|du Ballon Rouge Is Almost Here|
| The 7th annual du Ballon Rouge Children's Camping Weekend will be held March 20 - 22, 2009 at Camp For All in Burton, TX.|
Underwritten by TSA of Texas and other generous donors and at no cost to attendees, dBR provides an accepting yet vibrant setting for children with Tourette's syndrome to experience events and activities that can actually change the quality and outcome of their lives. The weekend begins with a campfire on Friday evening and concludes with our Red Balloon Ceremony on Sunday morning.
A very few number of spaces remain at this writing. If you haven't sent in your child's application forms yet, please fax them NOW to 281-238-0468. Click here to download an application form.
|Send a Lucky Child to du Ballon Rouge|
| Would you like to help send a child with TS to camp? Your $100.00 tax-deductible donation will send one happy camper to du Ballon rouge. Click here for more information.
|Meet Brad Cohen in Houston|
| Brad Cohen will be speaking to TSA of Texas in Houston on April 25, 2009. Brad is the author of Front of the Class: How Tourette Syndrome Made Me the Teacher I Never Had. His book was recently made into a Hallmark Hall of Fame movie that will be available on DVD in Hallmark stores in mid-April. There will be no cost to attend, and autographed copies of Brad's book will be available at a discounted price. Watch the website for more information on time and location.|
|Meet Brad's Mom: An Interview with Ellen Goldstein|
| Ellen Goldstein is warm, open and friendly, even over the phone. You'd like her. It's easy to see how her attitude and determination could help her son overcome almost insurmountable obstacles to become the man he is today. Ellen's son is Brad Cohen, who tells his uplifting, heart-wrenching story in Front of the Class: How Tourette Syndrome Made Me the Teacher I Never Had. Brad's book was also made into a wonderful Hallmark Hall of Fame movie which will be available on DVD at Hallmark stores in mid-April. Of course Ellen is immensely proud of Brad, especially the impact he has as a role model to kids with TS and other disabilities, but she's also glad he remains humble and low key, even telling her that speaking to a crowd of 1700 at the Capitol in Washington D.C. was "no big deal." |
Ellen played an important role in encouraging Brad to write "Front of the Class." Shortly after he received the Teacher of the Year award, she told him it was time to write a book. "Who'll read it?" he asked. "I will" was the answer. And when she did read it, years later, she felt it was an open letter to her. He had included many incidents he had never before told even her. Brad struggled through many rejections before finding a publisher for his book, but once he did, Ellen remembers thinking "now he's probably going to be on Oprah." And he was! Then she thought "it's time for a movie"-- not really believing that too would soon be a reality.
The movie got started when Brad happened to share a limo with Tim Shriver when they were both speaking at the same event. Tim is the current Chairman and CEO of the Special Olympics and a member of the Kennedy Family. Both speakers received standing ovations, but Brad's was just a little longer than Tim's. Tim joked he wanted to find out more about this Brad fellow, so Brad sent him a signed copy of his book. And the rest, as they say, is history. You'll see in the credits that Tim is the movie's producer.
Ellen was really pleased with how the movie turned out. Jimmy Wolk was unbelievable - she almost couldn't tell the difference between him and Brad. He had Brad's tics and mannerisms down pat. She also liked Patricia Heaton, who plays her in the movie, but still can't see herself as being so calm as portrayed in the movie.
Ellen has lots of great advice for other parents of children with TS:
1. Most importantly, don't hide your child's diagnosis. People know something is wrong, and they are more accepting if they know what it is. It is important to your child's self esteem to know you accept them as they are. Ellen learned this lesson the hard way. She initially didn't tell people about Brad's diagnosis--but as soon as she started talking about it things improved! If you couldn't accept her or her children, she did not want you in her life. But there were very few who could not accept it, and Brad felt better knowing that she was not hiding him, but was always standing behind him.
2. Don't baby your child. Let them be kids. Let them fall down. Let them learn they can survive. This will only make them stronger.
3. Take some chances. Many people doubted Ellen's decision to let Brad join the B'nai B'rith Youth Organization for Jewish teens. Participating in this leadership development program would be challenging even for a child who did not have TS. But it turned out that this did more for him than anything else. He learned a lot, traveled internationally, had the chance to speak publicly, and developed confidence in himself..
4. If you can, send them to camp every summer. They learn so much and get a chance to release some energy.
5. Live one day at a time. You just don't know what the future will hold.
|An Evening of Jazz: I Groove to My Own Move|
| Enjoy a casual evening of jazz starring Tetra featuring Shilah Phillips. Benefiting the North Texas Tourette Syndrome Support Group and the Tourette Syndrome Association of Texas, this fun event will be held May 16, 2009 at 7:00 pm at the R.L. Turner High School Performance Hall in Carrollton, Texas. Tickets are only $15.00 and may be purchased online by clicking here. Click here for more information. We hope to see you there!
Can't attend but still want to help? Donations of any amount are also being accepted. Please contact Emily.
|Best Emotional Intelligence Websites of 2008|
by Dr. Lawrence Shapiro
The Internet has had a profound affect on how we raise kids. Most of the time, the Internet is a positive force, providing us with information, connecting us with people, and aiding in the education of our kids. I have been particularly interested in web sites that deal with the mental health, the health, and safety of children and can't help but be excited when I find sites which are both authoritative and engaging. The websites are categorized by subject and listed in alphabetical order. Altruism
I've recommended this site several times throughout the year as a way kids and teens can build vocabulary, language, and other academic skills while donating to help feed hungry people throughout the world. With each right answer, the user donates 20 grains of rice (you will visually see how the rice is added to a virtual bowl), and you'll be surprised to see how quickly the rice mounts up. Money is donated to the UN World Food Program from the site sponsors. Best Features: This site is elegantly simple and kids can start helping feed the hungry in seconds. Bullying
Brought to you by the US Department of Health and Human Services, this website offers a character based online resource to teach young kids about bullying. Webisodes show short animated cartoons that teach kids about the different kinds of bullying and how to handle them and interactive games help reinforce the concepts. Best Feature: There are places on the site for educators and parents. The site is in both English and Spanish Drug Abuse Prevention
This website doesn't talk down to teens, but rather emphasizes the science of drug abuse. It includes facts, real stories, quizzes, and more. I'm not sure whether teens would be excited about this, but the site includes downloads of anti-drug slogans to use on t-shirts, computer "wall paper," and stickers. Best Feature: Smart lessons for teachers and parents including free downloads. Humor
Humor is such an important asset to a child, I recommend daily visits to this site for a good laugh. This website features jokes "by kids and for kids," and as you will see, kids submit jokes from all over the world. Best Features: Kids not only submit jokes but they get to vote on whether a joke is funny or not. A clever feature is that the punch line is "hidden" until you click on it. By the way: "What is green and has wheels?" Answer: "Grass, I liked about the wheels." Submitted to the site by Andrea, age 12. Kid Safetyhttp://www.usa.safekids.org/index.cfm
What could be more important than keeping kids safe? Safe Kids USA is a member of Safe Kids Wolrdwide, a global network of organizations whose mission is to prevent accidental childhood injury, a leading killer of children 14 and under. The site provides all kinds of safety information, from car safety, to product recalls, to fire safety. Best Feature: This is a comprehensive and reliable site that will make you think about the importance of child safety every day. It also includes activities for kids, such as quizzes, safety sheets, and coloring sheets.
I recommend this site over and over again in my newsletter, because it has such interesting, well-written and timely articles. Besides articles, kids will find games like "Mission Nutrition" and movies on subjects like asthma, coping with the after-effects of Hurricane Katrina, and what it is like to be a pro athlete. Best Features: Section on Dealing with Feelings is one of the most comprehensive collections of articles to help kids with emotional problems and what to do with them. This site also has a section for parents, which is sure to open your eyes, and fill your mind with important information. I highly recommend you check out their recent posting: 10 Kids Health Issues to Watch in 2009." http://kidshealth.org/Features.jsp?lic=1&feature=10
Sponsored by Goldfish™ Crackers (which is evident throughout the site), this site is dedicated to the benefits of helping kids become positive and optimistic thinkers. Backed by years of research, the site interactive activities for kids, videos, and great ideas for parents. Features: This is one of the few sites I've found dedicated to raising the emotional intelligence and resiliency of kids. Sex Education
This is always a tough issue for parents and many professionals as well, but we all agree that kids and teens need to know about sex and sexuality. The site is written "for teens by teens," so you can be sure it deals with up to the minute issues that teens are concerned about and uses language that doesn't sound preachy or stuffy. However it is also sponsored by the Teen to Teen Sexuality Project at Rutgers University, so you can trust this site to provide intelligent professional advice. Best Feature: This site gives teens critical information in a format they can relate to including comics and videos.
Teen Self Help
Part of the Kidshealth.org site, this site has lots of good articles written for teens about health and mental health issues. On a recent visit to the site, I found front page articles on: "Pilates," "What to do if you get the flu", and "I Think my Friend has an eating disorder." I don't think that there is any teen issue that you won't find on this site. Best Feature: The site is also translated into Spanish. Youth Smoking Prevention
Smoking remains a serious problem for teens (1 in 5 say that they have smoked in the past month) and this site provides parents with information about how to tell if a child or teen is smoking, and what to do about it. Besides the information on the site, you'll also find pdf brochures that can be downloaded in both English and Spanish. Best Features: The site has a special section for parents who smoke. The site also takes a "broad view" of raising non-smoking kids, including sections on teaching resiliency and coping skills. Web Safety
There are lots of sites that can help parents and kids with Internet safety. This one has a curriculum based on research from Harvard's Center on Media and Child Health in partnership with several other universities. The site is particularly well done with videos, interactive games, and an online books. Best Features: This site has serious resources behind it, which means that you can trust it to be up to date on the ever changing issues regarding Internet safety. Software to help parents keep their teens safe on MySpace.com is available in a Beta version.
|2009 Fundraiser Gala Enjoyed by All|
| Over 260 supporters gathered at Houston Country Club for the Tourette Syndrome Association of Texas gala, Unmasking the Face of Tourette's, on Thursday, January 22, 2009. Chairmen Jyl and Keith Calcote and Honorary Chairmen Anne and Robin French greeted guests in the New Orleans decorated Grand Ballroom, complete with hanging greenery, candlelit chandeliers, Mardi Gras beads, and gorgeous bright flowers - all accented with masks decorated by children dealing with TS. Attendees enjoyed bidding on the many auction items, including two miniature horses, a black lab puppy, rare wines, Waterford crystal, Boehm porcelain, a week in the Cayman Islands and a stay at a Santa Fe townhome, just to name a few. |
Honorees were Andrea White, community leader, author, and Houston's First Lady; and Joseph Jankovic, M.D., Professor of Neurology and Director of the Baylor College of Medicine's Parkinson's Disease Center and Movement Disorders Clinic. Ms. White spoke eloquently on overcoming adversity, while Dr. Jankovic explained the complicated neurology of Tourette's, providing new understanding of the disorder.
The highlights of the evening, however, were speakers 12 year old Cade Calcote, son of Chairmen Jyl and Keith Calcote, and Joshua Perez, 12 year old son of Wendy and Dr. Richard Perez of San Antonio. Both spoke with heart wrenching simplicity on the tremendous difficulty of living with TS. The evening raised funds for awareness and direct client services around the state, such as the TS Children's Camping Weekend; medical services for the indigent; and advocacy, scholarships and educational programs throughout Texas.
|I Am the Face of Tourette's |
by Joshua Perez
Joshua gave the following speech at the TSA of Texas Fundraising Gala held on January 22, 2009: Unmasking the Face of Tourette's.
Good Evening. My name is Joshua Perez. I am 12 years old from San Antonio. I am the face of Tourette's. I was diagnosed 3 years ago. Having Tourette's is very difficult every minute of the day. People don't understand, they stare and make nasty comments. Tourette Camp is very important to me. I can tic and no one stares. I have friends from the support group that go to camp with me. I make friends while I am there. 58 more days until camp. Thank you very much for coming tonight and helping Tourette of Texas. I am Joshua Perez, the face of Tourette's.
|How Tourette's Affects Kids|
by Cade Calcote
Cade gave the following speech at the TSA of Texas Fundraising Gala held on January 22, 2009: Unmasking the Face of Tourette's.
My name is Cade Calcote. I'm 12 years old and I'm in 7th grade. I have Tourette's syndrome. My Tourette's started when I was in 3rd grade. I don't think I'll ever forget it. During my 3rd grade Christmas party, I started rolling my eyes and couldn't stop so I got really worried. I told my mom and she took me to the doctor. Later I was diagnosed with Tourette's.
It all started with "tics." Tics are twitches and noises like shoulder shrugs, eye rolling, coughing and squeaking that are involuntary. As I got older my tics got worse. Tics may not sound that bad, but when you do the same movements a hundred times, your muscles start to hurt.
Tourette's is kind of like a package, but not the kind you want to get as a gift. It comes with other things like OCD and anxiety. Anxiety is worse for me than Tourette's. When my anxiety gets bad, I get scared and can't function. OCD is "obsessive compulsive disorder." OCD makes me obsessive about many things. It's especially annoying when I see something new I want like a video game. I obsess about getting it, and if I don't get it, I obsess more and more.
I've had a rough time in 7th grade, and I've missed a lot of school due to Tourette's. I just changed to a new school and I'm doing much better. I have already made new friends who are nice to me and understand my problems.
I wanted to speak tonight because I want people to know how Tourette's affects kids and what they have to go through. Thank you for listening, and maybe one day we can find a cure for Tourette's.
New Studies on Tourette's Syndrome Need Participants
by Dr. Beth Belluscio
People with Tourette's syndrome often describe that they are very sensitive to many aspects of their environment. This can involve sensations coming in through any or all of the five senses. In addition, many people describe a funny, uncomfortable sensation in their body which leads to the feeling that they want to tic. However, scientists have not yet focused on the sensory system in people with TS. Many questions need to be answered: Are people with TS able to detect more sensory information? Are people with TS more aware of sensory stimuli? Where does the funny feeling before a tic come from? If this funny feeling could be stopped, would the tics stop too?
Dr. Beth Belluscio, a Neurologist working with Dr. Mark Hallett at the National Institutes of Health (NIH), has recently begun two trials to try to answer some of these questions. She has an MD-PhD in neurobiology, with prior work focused on understanding the way nerve cells communicate and learn. She is now beginning to use that background to understand more about how nerve cells and the brain work in people with Tourette's syndrome. Dr. Belluscio believes that there is much we do not understand about the importance of sensory input in many features of TS. She is interested in meeting people living with TS to better understand their experiences.
The two new studies will take place on an outpatient basis in the Clinical Center at the NIH campus in Bethesda. Both require participants to be aged 18-65 and to have a diagnosis of Tourette syndrome. Travel funds and compensation for time spent in the study are provided. One of the studies focuses on determining the sensitivity of people with TS to external stimuli. It tests the sense of smell and touch as examples of input through the five senses. This study can be completed in one day. The second study focuses on finding out where the funny sensations that precede a tic come from. To try and prevent these sensations, local anesthesia (like novocaine) will be injected into a small area where the tic occurs. Participants will be asked to report on their sensations before and after the anesthesia and tics will be monitored to determine if they change following numbing of the area. This study will require 4-5 days (although not necessarily consecutively). In addition to these tests, participants in both studies will be asked to fill out several questionnaires to get a better sense of their entire experience of living with TS. They will also have a neurological exam and a structured interview regarding personality styles and mood.
Additional information about the studies is available through the NIH website, www.clinicaltrials.gov, and using the keywords "Tourette" and "sensory", or by depressing the control key and clicking on: Tourette Syndrome Studies. People interested in volunteering to take part in the studies can contact Dr. Belluscio at 301-402-3495 or email@example.com. She will be able to describe the studies in more detail, answer any questions about participation, and find out if interested people qualify. She will then set up an initial appointment to see her at the NIH, where informed consent will be completed. She is hopeful that a better understanding of the sensory aspect of TS will lead to better therapeutic approaches in the future.
|New Theatrical Release: Phoebe in Wonderland|
The national Tourette Syndrome Association, Inc. would like to inform you of the theatrical release of Phoebe in Wonderland on Friday, March 6. This fictional, highly creative story features Elle Fanning as the title character, Phoebe, who has Tourette's syndrome. Although TS is not the main focus of the film, the disorder plays an important role in the character's development and impacts the people around her. The movie opened last weekend in the following select cities: Los Angeles, New York, San Francisco, Chicago, Philadelphia, Boston, Washington, D.C., Seattle, Miami and Dallas.
The film is described by its creators as, "...a fantastical tale of a little girl who won't - or can't - follow the rules. Confounded by her clashes with the rule-obsessed world around her, Phoebe seeks enlightenment from her unconventional drama teacher, even as her brilliant but anguished mother looks to Phoebe herself for inspiration."
Felicity Huffman and Bill Pullman star as Phoebe's parents, Patricia Clarkson as Phoebe's drama teacher and Campbell Scott as the school principal. The film's writer and director, Daniel Barnz, used his filmmaking skills and artistic vision to create an imaginative and compassionate story about a young girl living with the disorder.
Following is a Q&A with Daniel Barnz:
Why did you choose to give Phoebe Tourette Syndrome?
I wanted to make a film that was anti-conformist in spirit, and Tourette Syndrome is a neurological disorder in which you are forced to break rules. I was interested in how people think children with Tourette Syndrome are choosing to act a certain way (i.e. why is this child acting out?), and then learn that, in fact, there is no choice.
I've also been a long-time Oliver Sacks junkie, and have always been blown away by how his descriptions of neurological disorders become larger metaphors for life - they offer these amazing prisms through which we can view human experience. I wanted to see if I could do something similar in film - what happens to a character who is forced to break rules in a rule-obsessed society?
How do you think Phoebe having TS affected the story and the people around her?
It's certainly a struggle for Phoebe and for her family, but I wanted to emphasize equally the benefits of difference - how being different can make you a stronger, better person. It's not just that it's okay to be different, but you can actually derive strength from it. The other characters sense this, and learn from Phoebe. Felicity's character, for example, keeps butting up against the conformist pressures of academia and motherhood. By seeing how her daughter grows and becomes stronger in the face of adversity, she does too. Like many parents, she learns from her child.
What do you hope people will walk away from this film knowing about TS?
Most importantly, I hope people understand that Tourette Syndrome does not define a person; it is a part - but not all - of a person. One of the things the film tries to do is layer in the Tourette Syndrome as part of Phoebe's overall coming-of age story, and this is not an easy thing to do. Audiences are used to seeing films about neurological disorders in which the disorder defines the whole of the narrative/character. In Phoebe in Wonderland, it is a part of the story, a part of Phoebe, and I hope audiences take away that there are no "Tourette Syndrome people" - there are people who have Tourette Syndrome.
| TSA of Texas Annual Fund Drive |
| We invite you to be a part of the TSA of Texas first Annual Fund Campaign where you can truly make a difference in the lives of children and families struggling with the challenges of Tourette's syndrome. |
In this time of economic uncertainty, your donations to us are more valuable than ever. Please consider a tax deductible gift. No amount is too small - even $5.00 collected from a number of people really adds up!
If you know others who might consider a gift to TSA of Texas, please let us know. We can send you copies of our Annual Fund drive letter and reply cards along with envelopes and stamps so you can mail them to your friends and family - even adding a personal handwritten note if you wish. Or if you prefer, just send us a list of names and addresses along with your name and connection to TS and we'll do the writing and mailing for you! Please contact Cindy with your request or to receive more information.
to view a copy of our Annual Fund Drive letter. Click here
to view the Annual Fund drive reply card you may include with your gift.
OUR DEEP THANKS to all who have contributed so far:
Major Underwriters: Bronze Level:
Renee and John Hawkins Cynthia and David Balfour
Janet and Mark Jacobs Drs. Patricia and Ian Butler
Joyce and Ian Clark
Director's Circle: Susan and Tom Cone
Shelley and Andrew Ricks Michael Conway
Platinum Level: Jennifer Harnish
Barbara and Daryl Brister Irene and Charles Hart
Gold Level: Sheryl and Dr. Dov Kadmon
Elaine and Donald Carlton Tracy and Kevin Karschnik
Robert Dunshie Denise Lovshe/Craig Owen
Michele and Kent Dyson Dr. and Mrs. Robert Matcha
Laurie and Anthony Farris Dianne and Donnie Migl
Barbara Hays/Todd Williams Rhonda and Arthur Rodriguez
Carolyn and Frank Jacobs Cindy and Howard Sacks
Kate and Jon Nogarede Anne Marie and Abel Salazar
Debra and Rodney Perrin Margaret and Ronald Sass
Ione and Ron Reder Victoria Singley
Eloise and David Roehrig Vanderlyn and Michael Singley
George Vela/Bayou Forming, Inc. Gerard Slack
Dr. Dennis S. Yaworski Judy and Gary Smith
Katrina and Rodolfo Villarreal III
Silver Level: Avril Wakefield
Cheryl Goad Lynn and Randy Waldman
Maria Martinez Connie Williams
Diane and Arthur Mundt
|Support Group Spotlight: East Texas / Golden Triangle |
| Those smiling faces you see belong to some young members of the East Texas/Golden Triangle TS support Group. Instead of a December meeting, leader Carrie Edwards arranged a super fun outing for her families - a suite for the Monster Jam Truck Show at Reliant Center on January 31st. Kids and their families were treated to the show, pizza, drinks and more! |
The East Texas / Golden Triangle Tourette Syndrome Support Group services a large portion of the state, including the cities of Colmesneil, Beaumont, Port Arthur, Orange, Lufkin, Nacogdoches, Diboll, Lumberton, Port Neches, Silsbee, Nederland, Livingston and more! The group meets quarterly on Sunday afternoons, rotating meeting locations between different cities.
Watch the TS web site for details on the next meeting, Sunday, April 19th from 2-4 pm at Adventure Kingdom in Lumberton. Adults will hold an open discussion on Tourette's syndrome, while the kids have a chance to play and work on their social skills! For more information, contact Carrie Edwards via phone at 409-837-2406 or via email at firstname.lastname@example.org.
|Save the Date for Tee-Off for Tourette|
The 15th Tee-Off for Tourette Charity Golf Event will be held Monday, October 19, 2009 at The Woodlands Country Club Arnold Palmer Signature Course. Pre-registered and pre-paid golfers will receive 2 tickets to attend any single day at the Champions Tour Administaff Small Business Classic, played on October 16-18, 2009 at The Woodlands Country Club Tournament Course. For more information on the tournament, sponsorships, or to donate auction items and door prizes, please contact Daryl or Barbara Brister, Tee-Off for Tourette Chairpersons, at email@example.com or (281)-395-5392. And if you are interested in hotel accommodations for Sunday, Oct. 18 or Monday, Oct. 19, at a discounted rate, please let us know as soon as possible so we can ensure that enough rooms will be reserved.
|Debi Aquino (an adult with TS) and her husband Victor celebrated their 20th wedding anniversary on December 3rd. Bailey Arnett of Pflugerville (age10) has had an excellent school year - she has made all A's. Her favorite subjects are math and science and she is even considering attending Harmony School for Science next year. Colton Bauer of Lakeway (age 12) received an award for perfect attendance and "A" honor roll. Amanda Bosson is in all the Pre AP and Gifted classes at her high school. She has received straight As so far this year, and also made the school soccer team. Cole Chavez of San Antonio made the Honor Roll at his high school this past fall and he is on track to do it again. He is also doing well in his Judo classes. Hunter Courts of Port Neches (age 12) and his sister Haleigh (age 13) recently performed in Tom Sawyer. Ricky Hodgson of San Antonio finished his first semester of community college with a 3.25 GPA. He has been invited to join the National Society of Leadership and Success due to his GPA. He also began a full time job working in McDonald's corporate office in January. Isaac of San Marcos (age 11) made straight As the first and second nine weeks of school. Sheryl Kadmon, Executive Director of TSA of Texas, exhibited her LaMancha dairy goats at the Houston Livestock Show and Rodeo March 3-5. "Kyrie" took second place and "Karma" placed third in their divisions. Yee haw! Ryne Nardecchia of Spring (age 13) was ranked first of the Tenor 2s selected to the All Region Choir for NW Houston intermediate schools (Region 9). He is also cast as Mr. John Brooke in the upcoming musical Little Women at Applause Theatre. Cooper Pickle of Paris (age 19) will graduate with his Associate's Degree in Applied Science/Drafting this summer. He will have completed his Associate's Degree in one year and will enroll at Texas A&M University - Commerce next fall to complete his Bachelor of Applied Arts and Science Degree in Drafting and Design. Cooper currently works part-time for Harrison, Walker and Harper as a drafter and graphic designer and he hopes to work there full-time upon completion of his Bachelor's Degree. Cooper has also performed with Encore, the top show choir/dance troupe for his college and even received free products and endorsements from several skate shops due to his skateboarding skills. Matt Plante was accepted into the Army National Guard last year. He just finished his basic training at Ft. Jackson and is now at Ft. Eustis completing his AIT (Advanced Individual Training) to repair Apache helicopters. Michael Plante will receive his Masters in Electrical Engineering from the University of Texas at Dallas on May 16th. He is still pursuing his Ph.D. Ray Reed of Houston suffered a moderately severe onset of TS at 12 years old. Today he is a successful Funeral Director and Embalmer with over 14 years of experience in his field. Victor Antonio Salazar of San Antonio (age 11) made the "B" honor roll. His parents are very proud of how hard he has worked and think he is the greatest. Laura Spencer of Port Neches is in her high school production of Bye Bye Birdie. Laura has also handled the transition to high school really well with a 3.0 GPA for the first semester. Austin Ward of The Woodlands (age 9) won the 10 and Under Division Top Forward in a recent roller hockey tournament. Even though this was Austin's first tournament, he scored the first two goals of the championship game, giving his team the momentum needed to win the game and first place in the tournament. Ethan Wilkins of Benbrook (age 8) has made the honor roll ALL YEAR so far. He's come a long way! 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. Or -- is there a topic or story you would like to see us cover in the future? A question you have for our Medical Advisory Board? Send your question, story and/or pictures to TouretteTexas@aol.com.|
|Physician Referral List|
|TSA of Texas maintains a list of Texas physicians who are experienced with TS. To receive a PRL for your area, please email TouretteTexas@aol.com with your city location. We are also seeking to expand our list, particularly in smaller cities, so if you have a physician who does a great job dealing with TS, please email us his or her contact information. PHYSICIANS: if you are interested in learning more about TS or being considered for our PRL, please contact Sheryl Kadmon, Executive Director, at 281-238-8096 or 866-896-8484.|
|How Can TSA of Texas Help You?|
|TSA of Texas is here to assist families dealing with TS throughout the state. We offer:
- EDUCATIONAL PRESENTATIONS for physicians, school districts, students, parents and the community.
- INFORMATION DISSEMINATION via packets, brochures and telephone conversations.
- LIBRARY of DVDs, videotapes and books.
- REFERRAL to physicians, therapists, community services, and state and county agencies.
- ADVOCACY through assistance with ARDs, IEP, 504 or OHI classification.
- SUPPORT GROUPS throughout the state.
- CHILDREN'S WEEKEND camping program "du Ballon Rouge."
- FAMILY ACTIVITIES such as baseball games, museum visits, swim parties, and more.
- SPECIAL FUNDING sources such as the Kenneth H. Davis Family Assistance Fund and Fund A Need.
- ...and much, much MORE!
Call TSA of Texas at 281-238-8096 (toll-free 1-866-894-8686) or email TouretteTexas@aol.com for more information. If you have needs other than those listed above, please let us know and we will do our best to help.
|How Can You Help TSA of Texas? |
TSA of Texas funds its services through private donations, fundraising events and grant support. We receive no state or federal funding. You can help TSA of Texas and support Texas families dealing with TS by:
- ATTENDING our fundraising events (e.g., our major Gala held each January and our Tee-Off for Tourette in October)
- DONATING items or gift certificates for Silent Auction at Gala or Tee-Off
- ORDERING a tribute card sent in honor of someone's special event,
- CONTRIBUTING via cash, check or credit card to our general fund or a support group of your choice,
- LINKING your Randall's Remarkable Card to charity #2493, or
- REQUESTING a Kroger Neighbor to Neighbor bar code to link to your Kroger Share card..
All donations are totally tax deductible. Learn More>>