||Vol 2, Issue 2 |
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 OCD, ADHD, 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 Executive Director|
| When school ends and summer arrives, our families dealing with TS typically become less stressed and more relaxed. Correspondingly, the TSA of Texas telephone lines begin to ring a bit less, giving us the necessary time to begin major strategizing and planning for the coming year. |
Through the generosity of donors and the incredible hard work of the Executive Board and The Board of Directors, you will find multiple, enhanced services and programs in 2008 - 2009. An additional part-time staff person has been hired to coordinate and establish new support groups throughout the state. And - we welcome a new TSA of Texas Board president - Daryl Brister.
Our long tenured President of the Executive Board and The Board of Directors, Charles Hart, has stepped down after 22 years of service. With sterling academic credentials (Rice University and Wharton School of Finance), Charlie is a CPA, a former CEO and a respected businessman. Charlie has been a real inspiration to all of us. He also has Tourette's syndrome and what he refers to as "obsessive-repulsive" disorder (really, it's OCD).
His enthusiasm, humor, hard work and generosity laid the foundation for TSA of Texas. Charlie provided and paid for our first office space and support services; he wrote grants and he reviewed paperwork and protocols.
Charlie never said "no" or "we can't do this" to any worthy project; instead he always creatively found a way to make it happen. His leadership, energy and love have been an invaluable blessing to every person touched by Tourette's syndrome in the state of Texas. We are all greatly indebted. Charlie will continue to serve in an advisory capacity on the Board.
Hoping your summer remains quiet a few more weeks.
Lots of love,
In our next quarterly newsletter, you will meet Daryl Brister, new TSA of Texas Board President.
Toll Free: 866-894-8686
Emergency Pager: 800-209-0796
Save These Dates!
July/August - Summer Swim Parties throughout Texas. See article below for more information.
August - October - "Educational Impact of Tourette's Syndrome" will be presented by Sheryl Kadmon throughout Texas. See article below for dates and times near you.
- September 2008 - Baseball Outings throughout Texas. Look for more information on www.tourettetexas.org soon!
October 20, 2008 - Tee Off for Tourette: The 14th Annual Golf Fundraiser will include door prizes, contests and a silent auction.
November 9, 2008 - Museum Day - free museum tickets throughout Texas. Look for more information on www.tourettetexas.org soon!
Tourette's Syndrome Joins Autism As Silent Epidemic
A study published in 2007 shows the incidence of Tourette's syndrome is on the rise. The study appearing in the Archives of Pediatric & Adolescent Medicine found "not only marked increases in autism as expected, but also in hyperactivity and Tourette's syndrome."
"This study highlights not only the alarming widespread rise of Tourette's and neuropsychiatric disorders in children as a whole, but the growing need for support and services for the children and families affected by these disorders," remarked Faith Rice, Executive Director of the Tourette Syndrome Association of New Jersey (TSANJ).
The study, conducted by Denmark's University of Aarhus, tracked over 650,000 children over a ten year period. Researchers found marked increases in diagnoses of Tourette's as well as autism and hyperkinetic disorder. The report did not identify what had caused the increases. Learn More>>
|15th National TSA Conference|
|More than 320 people gathered in Alexandria, Virginia for the15th biennial National TSA Conference last April. People came from across the U.S. and around the world to learn more about TS, connect with other families and to experience an environment in which TS is the norm and no one ever needs to explain a tic. Click here to read more about the conference and see photos. Click here to see copies of the presentations.|
|Join Us for a Splashing Good Time!|
|TSA of Texas is hosting Summer Swim Parties throughout Texas during the months of July and August. All families dealing with Tourette's syndrome are welcome to attend, but you must RSVP to your local support group leader or TouretteTexas@aol.com with the number of adults and children attending. Thanks to the generosity of our donors, there is no cost to attend.
- Austin - Sunday, July 13th from 10:00 am to noon at the Rock'N River Aquatic Park in Old Settler's Park in Round Rock (near the Dell Diamond). Please bring a snack to share.
- Dallas (North Texas) - Sunday, August 17th from 6:00 pm to 8:00 pm at the Rosemeade Rainforest Aquatic Complex in Carrollton.
- Fort Worth - Sunday, August 17th from 2:30 to 6:00 pm at Bedford Splash - Boys Ranch in Bedford, TX.
- Houston/Katy - Thursday, August 21st from 7:00 pm to 9:00 pm at Cinco Ranch Water Park in Katy. Pizza will be provided! Please bring chips, cookies, fruit or other snack type food to add to the refreshment table.
- San Antonio - Sunday, August 10th from 2:00 - 4:00 at the NISD aquatic center. Pizza and drinks will be provided!
|Educational Impact of Tourette's Syndrome|
Sheryl Kadmon, Executive Director of TSA of Texas, will be conducting In-Service Training on the "Educational Impact of Tourette's Syndrome" in cities around the state during the months of August through October. The presentations are FREE of charge and open to parents, teachers, therapists, physicians, TS family members, school nurses or anyone interested in learning more about TS. Parents, this will help you and your school prepare for the next school year, so be sure to invite your child's teachers! Please RSVP to your local support group leader or TouretteTexas@aol.com with the number of adults and children attending.
- Austin - Tuesday, October 7th from 6:30 to 8:00 pm at Seton Medical Center (McFadden Auditorium).
- Dallas/North Texas - Saturday, September 13th from 10:00 am to noon at Brookhaven Community College, Building M, Rooms 212 and 210.
- Fort Worth - Saturday, August 9th from 5:30 to 7:00 pm at Baylor All Saints Hospital, Third Floor, Building B, Room B3.
- North Houston - Tuesday, September 9th at 7:30 pm at St. Ignatius Catholic Church (Christus Center).
- Southeast Texas/Golden Triangle Area - Sunday, September 7th at 3:00 pm at Colmesneil Community Center.
- Katy - Wednesday, September 10th from 7:00 to 9:00 pm at Christus St. Catherine Hospital, Classroom B (upstairs).
- San Antonio - Tuesday, September 2nd from 6:30 to 8:00 pm at Methodist Healthcare System.
|Your Support Group Needs You!|
|You may not always need your support group, but it needs you! We are all busy, and when TS symptoms are waning and things are going smoothly it is harder to find time to make a support group meeting. But remember, families with a newly diagnosed child need to talk to those with experience. Your support and contributions to the discussion will make a huge difference to another family!|
|New Location for Tee-Off for Tourette! |
by Barbara Brister, Tee-Off for Tourette Co-Chair
It's that time of year when our thoughts turn to golf; and this year's tournament is bringing a few changes! The TSA of Texas 14th Annual Tee-Off for Tourette Charity Golf Tournament will be held Monday, October 20, at The Woodlands Country Club Arnold Palmer Signature Course in The Woodlands, Texas. The day includes lunch and dinner, drinks, door prizes and silent auction.
Not only is this a new location this year, but all golfers who pre-register and pre-pay will receive two tickets to attend any single day at the Champions Tour Administaff Small Business Classic to be played on October 17-19 at The Woodlands Country Club Tournament Course! We're hoping this will increase our sponsorships and bring in new golfers to make this our most successful golf tournament yet.
Please consider how you can help. Perhaps you can ask a business or individual to sponsor holes, donate auction items, provide door prizes, or even secure one of the larger sponsors for us. Remember that no donation is too small and that all proceeds go to help families dealing with TS across the great state of Texas.
It's all about filling the field with men and women who are ready and willing to have a great day, so help us spread the word to anyone who likes to swing a club. Tournament brochures will soon be available for mailing and on the TSA of Texas website. If you would like more information, please contact Daryl or Barbara Brister at 281-395-5392 or email@example.com
. Information will also be available on the website at www.tourettetexas.org
. This year's tournament is going to be fantastic and we want you
to be involved!
|WE MOVE: Great Website for TS Information and Resources|
|WE MOVE is a not-for-profit organization that utilizes creativity, innovation, and collaborative approaches to improve awareness, diagnosis, and management of movement disorders among people living with these conditions and the professionals who care for them. Check it out for information, resources, links and a discussion forum on Tourette's syndrome: http://www.wemove.org/ts/.|
|New Surveys for Children and Adults Over 55 Living with TS|
| Dr. Douglas Woods and colleagues from the University of Wisconsin - Milwaukee, along with several members from our national TSA Medical Advisory Board, have embarked on an important and extensive data collecting project designed to gather information about the impact of tics on the lives of children with Tourette's syndrome (TS) and Chronic Tic Disorders. If we succeed in having as many people as possible participating, responses to this very worthwhile project will allow TSA and the treating community to learn much more about a very broad range of issues relevant to having and coping with TS. Undoubtedly, this information will help us better serve our TS community's needs. |
Internet based, the survey responses are submitted anonymously, and strict confidentiality is assured. Only parents/legal guardians (over 18) who reside in the U.S. are eligible to participate. The survey consists of a parent (legal guardian) portion and a child portion, which each take about 45 minutes to complete (total time 90 minutes). Only children between the ages of 10-17 will be asked to fill out the child section. For children younger than 10, only the parent portion needs to be completed. Click here for more information and to start the survey.
Lisa Cox, Ph.D., is a licensed clinical social worker and an Associate Professor of Social Work and Gerontology at The Richard Stockton College of New Jersey's School of Social and Behavioral Sciences. Starting this September 2008, Dr. Cox will be taking a sabbatical and will be using the time to study the impact that TS has on the lives of people older than 55. To participate in this study, please contact Dr. Cox at 609-652-4310 or firstname.lastname@example.org
. These two surveys are in addition to another adult survey
which we advised you of in a previous newsletter. That adult survey is on-going and can be accessed here
|Accommodations for the SAT and TAKS|
| If your high school student will take the SAT during the 2008/2009 school year, you should contact the school's counselor as soon as school starts to request accommodations for the test. Requesting 50% more time on the SAT requires up-to-date paperwork, including: current IEP, 504, neuropsychological or education testing results. Talk with your school's counselor regarding specifics...but remember the deadline is NOW!
Additionally, if planning accommodations for your child during TAKS testing, be sure you choose the correct TAKS version during your ARD. Click here
to view a TAKS Assessment Comparison Chart for students receiving Special Education services (also available in the Document Library on our website).
|Are You Off to College This Fall?|
|If you will be away at college in the fall and want to request a single room (without a roommate) due to tics or other special needs, you must speak to the college's Disability Support Services office and to its Housing office immediately. The Disability Support Services office may be called by many different names: Accessibility Services, Office of Accessibility, or Students with Disability Resource Center. Regardless of its title, as soon as you have been accepted and decided where you will attend, take the initiative to contact the school and to process your request. In order to receive accommodations, the student (not the parents) must register and provide documentation of a disability to the appropriate college office. Each school has different documentation requirements, so check with your college now to learn what they want you to submit. Please note: college transcripts do not show that a student received accommodations. |
|New TS Information Packets Available in August|
|The TSA of Texas information packets are being updated and the new packet will be available August 2nd. You may email email@example.com to have one mailed to you (be sure to include your mailing address), or look for the entire package to be available for download on www.tourettetexas.org by the middle of August. |
|Generous 12 Year Old Sends Eight Kids to Camp!|
|Thanks to Harry Patterson of Houston, eight children with Tourette's syndrome were able to attend du Ballon Rouge, our weekend camping experience, this past March. Harry, who does not have TS himself, decided to forgo presents at his twelfth birthday party and to instead request donations to TSA of Texas, thus presenting TSA of Texas with over $800. Following a family tradition of choosing a charity each year to honor, this generous young man had previously donated his 2007 Christmas money to TSA of Texas. Harry had learned about TS via reading and seeing information about it on television. We appreciate the generosity and charitable spirit of Harry and his family! For those interested in following this family's munificent example, find a copy of Harry's birthday invitation here.|
|Our Trip to the Hill|
by Emily Stark, North Texas Support Group Leader
For Ron, Rily and me, our trip to the Hill was a fantastic experience I don't think any of us will ever forget. Besides being in Washington to attend the TSA National Conference, we were able to see the monuments and some of the great museums, and WE WENT TO CAPITAL HILL! We walked the halls where bills are written and signed into law; we met with aides to Senators Hutchison and Cornyn. We also met with aides to Congressmen Sessions, Johnson, Barton and Gohmert. We actually got to meet and have pictures taken with Senator Hutchison and Congressman Sessions, and to be present while Congressman Sessions was presented the TSA Legislative Award. How cool is that?! But it gets even better - we specifically spoke to our representatives not only about continued funding for TS but about passing GINA. GINA (Genetic Information Nondiscrimination Act) is important not only to TS, but to anyone with a disease or disorder that is genetically transferred from one generation to the next. I was so excited to get an email from Senator John Cornyn's office telling me that not only had GINA been approved by the House and Senate, but that President Bush had signed it into effect May 21st. How many times in your life can you say you were part of making history, and not just making history but doing something that helps so many, many people? And yes, we know we didn't do it ALL by ourselves! We were honored to represent TSA of Texas and TSA, Inc. Hey, maybe Senator Cornyn will send us one of the pens President Bush used to sign the bill into law! It never hurts to ask!! (We'll let you know if we get one!)
|Support Group Spotlight: San Antonio|
|by Wendy Perez, San Antonio Co-Support Group Leader
The San Antonio TS Support Group has been meeting for over two years. During this time, nearly 100 people have attended a meeting and each month a new family joins the group!
In June, the group celebrated support group member Rick Hodgson graduating from High School. Rick and his mom Linda have been with the group since the first meeting.
The group is looking forward to several upcoming events. The Summer Swim Party will be held August 10th. Sheryl Kadmon will be back on September 2nd for her "Back to School" in-service. Many children in the group will be starting middle school this fall, so this discussion will be very helpful to some nervous parents! Group members will also run or walk for TS in the San Antonio Rock 'N' Roll Marathon on November 26th.
Wendy is Co-Support Group leader, along with Trish Rubio. The San Antonio TS Support Group meets the first Tuesday of each month. For more information, please contact Wendy at 210-479-3740 or Pod1098@aol.com or Trish at 210-372-0395 or firstname.lastname@example.org.
Brenton Brister of Katy performed in a Lyric Opera, Gianni Schicchi, in May. Brenton played the part of the shoemaker Penillino. Brenton enrolled in the Opera Workshop class and voice lessons as extracurricular courses. Hunter Courts of Port Neches (age 12) and his sister Haleigh Courts (age13) both recently won the "Peoples Choice Junior" male and female awards at the Port Arthur Little Theater's Annual Spotlight Awards for their performances in "A Christmas Carol" this past December. Hunter and his sister have performed in numerous musicals including "Oliver" ,"Annie", "Charlotte's Web", "Peter Pan" and "Music Man" just to name a few. Hunter also recently sang a solo from "Phantom of the Opera" in his school talent show. Yes, he was in full costume dressed as the phantom - mask, cape, gloves, and all! Ricky Hodgson of San Antonio (age 19) graduated from high school on the AB honor roll! To celebrate this milestone, he and his mom. Linda, traveled 900 land miles on a tour bus from New York to Washington DC to see our nation's heritage come alive. Ricky plans to attend a community college in the fall working on a criminal law degree. Joshua Kleindienst (age 8) is excited to be moving to Palm Harbor, Florida to help his 18 month old cousin, Lily. Lily has autism and Joshua will be assisting her with learning to talk and follow simple directions. He has been helping children in his church's program G.R.A.C.E. for a little over a year so he is well prepared. Joshua also had autism as a child and was still at the top of his class in Kindergarten, 1st and 2nd grade! Rachel Marsh of Plano (age 8) has read every Harry Potter book over 4 times! Lindsey Pate of Harper (age 17) recently performed in the stage production of "Singin' In The Rain" at the Kathleen C. Cailloux Center for the Performing Arts in Kerrville. Lindsey was recently selected as one of only 15 members to enter the Playhouse 2000 Academy. She has performed in several roles including, Scout in "To Kill A Mockingbird", Ernestine in "Cheaper By The Dozen" and Polly in "The Magician's Nephew" from the Cronicles of Narnia series. She plans to study the performing arts in college. Anthony Ruyle of Fort Worth (age 16) thought he would never make it through middle school, but now he has survived and thrived his 9th grade year. He made the honor roll, missed very little school, and absolutely enjoyed his school year! Double good news from the Sacks household in Houston! Logan, age 18, has graduated from Penn Foster High School with a 3.6 GPA. Logan intends to continue his education at Houston Community College in the fall. Michael, age 21, has been accepted into the Harris County Sheriff's Department training program, beginning after Labor Day. In the meantime, Michael is moving into his first solo apartment at the end of July. CONGRATULATIONS to all of these hard working Super Stars!!!
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.
|Texas Support Groups|
|TSA of Texas has support groups in Austin, Channelview, Dallas, Fort Worth, Southeast 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. |
|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 on 1/29/2009 or Tee-Off on 10/20/2008),
- DONATING an item or gift certificate 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>>