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Summer 2008
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Vol 2,
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
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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.
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From the Executive Director
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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,
Sheryl
In our next quarterly
newsletter, you will meet Daryl Brister, new TSA of Texas Board
President.
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Texas Hotlines
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Houston:
281-238-8096
Emergency
Pager: 800-209-0796
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Save These Dates!
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- 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!
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Tourette's Syndrome Joins Autism
As Silent Epidemic
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 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>>
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15th National TSA Conference
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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.
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Join Us for a Splashing Good Time!
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 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!
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Educational Impact of Tourette's Syndrome
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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.
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Your Support Group Needs You!
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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!
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New Location for Tee-Off for Tourette!
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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 darbar4@comcast.net. 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!
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WE MOVE: Great Website for TS Information and
Resources
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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/.
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New Surveys for Children and Adults Over 55 Living with
TS
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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 lisa.cox@stockton.edu.
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.
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Accommodations for the SAT and TAKS
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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).
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Are You Off to College This Fall?
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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.
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New TS Information Packets Available in August
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The TSA of Texas information packets are being updated and
the new packet will be available August 2nd. You may
email tourettetexas@aol.org
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.
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Generous 12 Year Old Sends Eight Kids to Camp!
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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.
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Our Trip to the Hill
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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!)
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Support Group Spotlight: San
Antonio
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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 trish.rubio@mhshealth.com.
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"Bonne Nouvelle"
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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.
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Texas Support Groups
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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.
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Physician Referral List
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TSA of Texas maintains a list of Texas physicians who are
experienced with TS. To receive a PRL for your area, please email TouretteTexas@aol.com
with your city location. We are
also seeking to expand our list, particularly in smaller cities, so if
you have a physician who does a great job dealing with TS, please email
us his or her contact information.
PHYSICIANS: if you are interested in learning more
about TS or being considered for our PRL, please contact Sheryl Kadmon,
Executive Director, at 281-238-8096 or 866-896-8484.
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How Can TSA of Texas Help You?
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TSA of Texas is here to assist families dealing with TS
throughout the state. We offer:
- 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.
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How Can You Help TSA of Texas?
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TSA of Texas funds its services through private donations,
fundraising events and grant support.
We receive no state or federal funding. You can help TSA of Texas
and support Texas families dealing with TS by:
- 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>>
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