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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 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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 Welcome to our first state-wide e-newsletter, "Bonne
Nouvelle - Your Good News from TSA of Texas." We are excited to share
with you the support, advocacy, information, activities and opportunities
we can offer to you here in the great state of Texas.
The Tourette
Syndrome Association of Texas is one of the largest and certainly one of
the most innovative TSA Chapters in the country. The wide network of services we offer
throughout the state is unprecedented anywhere. This is due to the generosity of our
donors and the love and commitment of our dedicated volunteers, support
group leaders, Board of Directors, Executive Committee, Medical Advisory
Board and camp counselors. We
invite and encourage each of you, if you are not already, to become an active
participant in TSA of Texas. Working together we can
dramatically improve the lives of those with TS.
Please feel free
to forward this newsletter to friends, family, teachers, physicians -
anyone with an interest in TS - and invite them to sign up for the
newsletter themselves. And let us
know your ideas and needs - we
are here for you and your family.
Finally, special
thanks to Shelley Matcha and Cindy Sacks for the conception, design and
delivery of this fabulous newsletter.
Sheryl Kadmon, R.N., has been Executive Director of TSA of Texas for over 20
years. Feel free to call or email
her at any time.
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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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- October
2
- San Antonio Support Group: Sheryl Kadmon discusses
"School Preparedness. Learn More>>
- October 5
- Tee-Off for Tourette Jumpin' Jambalaya Kick-Off party in
Richmond, Texas. Contact darbar4@comcast.net for more information and
directions.
- October
9 - North Houston Support Group: Sheryl Kadmon
discusses School Preparedness." Learn More>>
- October
10 - Katy Support Group:
Sheryl Kadmon discusses "School Preparedness." Learn More>>
- October
13 - Macy's Shop for a Cause. Save $10 off
a $20 purchase, receive 10-20% off all purchases, and
register to win a $500 Macy's gift card! Learn More>>
- October
22 - 13th Annual Tee-Off for
Tourette golf tournament in Katy, Texas. Learn More>>
- November
11 - Museum Day. Watch
the TSA of Texas website for information on
free museum passes in Austin, Dallas, Fort Worth, Houston and San
Antonio!
- January
13, 2008 -
Participate in the Houston Chevron Marathon and help TSA get One
Step Closer to a Cure!
Learn More>>
- January
31, 2008 - TSA of Texas
Gala at Houston Country Club. More details on this
festive evening of cocktails, dinner, silent and LIVE auctions
and entertainment will soon be posted on the TSA of Texas website!
- March
28-30, 2008 - 6th Annual
du Ballon Rouge Children's Weekend. Learn More>>
- April
4-6, 2008 - National
TSA Conference in Alexandria, VA. Learn More>>
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13th Annual Tee-Off for Tourette
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Fore! Is there a better way to spend a
gorgeous, crisp Monday afternoon than golfing with friends on a beautiful
green course? Of course
not! Come
join us for the 13th Annual Tee-Off for Tourette Charity Golf
Tournament on Monday, October 22 at Willow Fork
Country Club in Katy, TX -- a protected wetland complete with alligators! Last year we had 122 golfers and
fantastic weather. This year we
would really like to have the full field of 144 golfers! Tee-Off registration includes green
fee/golf cart, range balls, Ping shirt, cap, goodie bag, drinks, beer,
lunch and dinner. Add in prizes, a
silent auction, a raffle and door prizes, and you have one great
day! The best part of all? All the proceeds go directly to TSA of
Texas, helping children and changing lives for families dealing with
TS throughout Texas. This is
one of our major fundraisers, so your support is greatly needed and most
appreciated. Register as an individual player or a four-person
team. Sponsor a hole (only $100!)
or become a Title sponsor ($5,000).
Donate an item for silent auction.
Send a cash donation of any size.
The ways you can show your support for TSA of Texas children are
endless. Learn More and Register>>
The kick-off party for the golf tournament, "Jumpin'
Jambalaya," is Friday,
October 5 at the 5K Ranch in
Richmond, Texas. Guests are asked to bring items
or cash donations for the silent auction. In return they enjoy
home-made jambalaya, bread, beer and yummy desserts. Contact darbar4@comcast.net for
more information and directions.
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Medical Update: The
Treatment of Tics Associated with Tourette Syndrome
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by Joseph Jankovic, M.D.
Tourette Syndrome (TS) was for a long time
wrongly considered to be a psychological disorder, even though the French
neurologist, Georges Gilles de la Tourette who first described the
disorder in 1885, emphasized its hereditary nature. This misperception of
TS began to change in the 1960s, when the beneficial effects of drugs
initially used to treat schizophrenia began to be recognized. This
observation helped to refocus attention from psychological causes of TS
to neurological mechanisms for this disorder, manifested chiefly by involuntary
movements and noises, called tics. In addition to motor and phonic tics,
many patients with TS also have attention deficit with or without
hyperactivity, obsessive compulsive disorder, difficulty controlling
their impulses, and other behavioral co-morbidities. Because of the broad
range of neurologic and behavioral manifestations, therapy of TS must be
tailored specifically to the needs of the individual patient. The most
troublesome symptom should be targeted first. In this brief review I will
focus on the treatment of motor and phonic (vocal) tics.
While behavioral therapy such as
habit-reversal training (see September 3 issue of Newsweek) may be useful for some patients, given the demands
on time and effort on the part of the patient, the therapist, and
parents, in my experience the compliance with the instructions and the
technique is difficult to sustain, and therefore the benefits are usually
only temporary. These therapies, however, may be useful ancillary
measures in patients whose response to other therapies, including
medications, is not entirely satisfactory.
The
goal of treatment is not necessarily to completely eliminate all the
tics, but to achieve a tolerable suppression of the involuntary movements
and noises. Because of the variability of tics in terms of severity,
frequency, and distribution, the assessment of efficacy of a therapeutic
intervention on tics is often quite problematic. Before initiating any
therapy, the patients and their parents should be instructed how to evaluate
and "quantitate" the tics so they can provide objective
assessment of the response to the therapeutic intervention. Among the
guiding principles in the treatment of tics is to have realistic
expectations. Furthermore, it is essential that each medication is given
adequate time to work and that the patients are observed for evidence of
potential adverse effects without necessarily panicking when a new
symptom occurs, as this may or may not be a side effect of the prescribed
medication, but may be completely unrelated.
Over the years, placebo-controlled trials as well as observations by
experienced clinicians have concluded that drugs that block dopamine
transmission are by far the most effective in suppressing tics. Almost
all currently used anti-tic drugs, called neuroleptics, act by blocking
the brain's dopamine receptors, but one drug, tetrabenazine, acts by
depleting the storage of dopamine. Although haloperidol (Haldol) and
pimozide (Orap) are the only neuroleptics approved by the Food and Drug
Administration (FDA) for the treatment of TS, I rarely ever use these two
drugs, because of relative lack of efficacy and high incidence of side
effects. These include sedation, weight gain, school phobia, liver
toxicity, and many other potential adverse effects, including tardive
dyskinesia. This latter condition consists of continuous involuntary
movements, different from tics, that usually involve the lower face, jaw
and tongue, which may be permanent, particularly if not detected early.
This potential complication is one reason why all patients treated with
neuroleptics should be carefully monitored by their physicians who must
be skilled in recognizing early signs of tardive dyskinesia. Of the dozen
or so neuroleptics currently on the market, I prefer fluphenazine
(Prolixin) since it appears to have a lower incidence of sedation and
other side effects than the other neuroleptics. Furthermore, after
treating hundreds and hundreds of TS patients with this drug I have never
observed tardive dyskinesia, even though this is a potential complication
of this treatment. If fluphenazine fails to adequately control tics, I
usually substitute risperidone (Risperdal), but in many cases,
particularly if their tics are troublesome, I will initiate therapy with
tetrabenazine. While a powerful anti-tic drug, tetrabenazine has not yet
been approved for clinical use in the United States. We are working
diligently with the FDA to have the drug finally approved in 2008, at
least for the treatment of chorea associated with Huntington's disease.
Once approved for this indication, physicians will be able to prescribe
it for treatment of other movement disorders, including tics. Since I
received a special permission from the FDA in 1979 to use tetrabenazine,
I have used it in well over a thousand patients and have never seen
tardive dyskinesia as a complication. Over the past three decades I have
published dozens of articles demonstrating the efficacy and safety of
tetrabenazine in the treatment of a variety of movement disorders
including tics associated with TS. Although usually well tolerated,
tetrabenazine may cause drowsiness, slowness of movement, and mood
changes, but all these side effects are dose related and usually resolve
when the dosage is reduced or the drug is discontinued.
In patients who have localized (focal) but disabling tics, local
injection of botulinum toxin may provide a 3-6 month relief. We were the
first to publish results of botulinum toxin injection into vocal cords in
patients with TS who experience phonic tics, such as loud screaming and
shouting of obscenities (coprolalia). Botulinum toxin is also very
effective in treating blinking tics that may otherwise render patients
essentially blind, severe "whiplash" tics manifested by sudden extension
or flexion of the neck that could otherwise damage the cervical spinal
cord, and other troublesome tics. Taking advantage of the well known
premonitory sensation, a feeling in the region of the tic prior to the
movement, the botulinum toxin injection can be targeted to the most
appropriate muscle(s). Although botulinum toxin is the most powerful
biologic toxin known to man, when used appropriately it rarely causes
serious side effects, but it may be associated with transient weakness of
the injected muscles.
Finally, more recently I
and my associates in the TS Clinic at Baylor College of Medicine have
also used surgery to treat patients who have such disabling tics and
obsessive compulsive disorder that their health and life were in
jeopardy, hence the term "malignant TS." Placing electrodes
into the part of the brain that is involved in generation of tics and
stimulating it with a high frequency stimulus has been found effective
not only in controlling the tics but also the associated behavioral
problems. With better understanding of the genetics and pathophysiology
of tics, it is likely that more effective therapies will be developed in
the future.
Joseph Jankovic,
M.D. is
the Director of the Parkinson's Disease Center and Movement Disorders
Clinic at Baylor College of Medicine in Houston and Chairman of the TSA
of Texas Medical Advisory Board. Click here
to visit Dr. Jankovic's website for further information.
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du Ballon Rouge Children's
Weekend
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 by Michael Conway, dBR Director
Sending
your wish by red balloon into a clear, blue Texas sky with hopes that it
will come true - anything is possible at du Ballon Rouge! du
Ballon Rouge (dBR) is a unique time and place for children diagnosed with
Tourette's syndrome (TS). Held annually in the hill country of
Texas, dBR provides a setting for children with TS to experience events
and activities that can positively change and improve the quality of
their lives.
Our mission is "to enrich the lives of children diagnosed with TS
through a unique outdoor experience that offers acceptance, provides
hope, promotes discovery, and creates the opportunity to establish
relationships with others affected by TS." The program is
designed for children between the ages of 6 and 18 whose primary diagnosis
is TS. Many of our participants exhibit other TS related conditions
such as OCD and ADHD.
Currently, thanks to support from our wonderful donors, there is no
cost for campers to attend dBR. Campers are assigned to cabins
based on their age and gender and participate in activities both as a
cabin and as a group throughout the weekend.. Activities
include fishing, horseback riding, canoeing, arts and crafts, a ropes
challenge course, swimming, and team sports. Our 5th Annual du Ballon Rouge
Weekend, held March 23-25, 2007, hosted 76 campers - our
largest number of campers to date!
Du Ballon Rouge was recently the
subject of an award-winning
documentary: "Tourette Unscripted" by Zach Jankovic.
Shot on location during the 2006 dBR, this heart-rending yet
uplifting documentary won a Platinum Award at the 40th Annual
International Film Festival in April, 2007.
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2008 Gala Fundraiser
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Mark January 31, 2008 on your calendar to join TSA of
Texas at the Houston Country Club for our
largest annual fundraiser. This year's theme will be "Paris: Cite de
Luminere -- a Frankly French Gala Evening." Details on this festive evening of
cocktails, dinner, silent and live auctions and entertainment
will be featured in our winter newsletter. Please email tourettetexas@aol.com
to receive an invitation.
PARENTS:
As part of the written
Program for the evening, we include writings and drawings from
our children and teens dealing with TS. Please encourage your
budding artists and writers to participate. Give your child's work
to your support group leader or mail it to the TS
office. Each contributor will receive a copy of
the Program.
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Texas Support Groups
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TSA of Texas has support groups in Austin, Channelview, Clear Lake, Dallas, Fort Worth, 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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Team TSA: One Lap Closer
to a Cure
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 TEAM TSA has been accepted into
the Chevron Houston Marathon for January 13, 2008! TEAM TSA
members run, walk or cycle to benefit more than just their own
health. With every step they help TSA get One Lap Closer to a Cure
for Tourette Syndrome. The Houston marathon offers a wide variety
of events to accommodate all different skill levels. It combines a
competitive fun athletic event with a citywide festival of community
spirit. Runners and spectators enjoy miles of non-stop
entertainment provided by the unique "Hoopla Brigade."
Professional and not-so-professional performers ranging from jump-rope
squads to jazz bands to belly dancers encourage runners and walkers to
keep their feet moving. Please join our mission. Your
support makes a difference! Learn More>
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Running for Her Hero
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 Loli Gonzales-Hill, who has joined TEAM
TSA, participated in the Hamilton Dove Festival (5k) running event in September
to support TSA. Her motive to run was a very special one
for a very special boy, her son.
Her son Kyle was diagnosed with TS April 2006. With some medication, he
is usually an active and happy 6-year-old. But the TS is not completely
controlled, and there is no cure. Currently, she and her husband Roy are
working with a neurologist to find the right course of treatment for Kyle
to get better control of the tics. "He is a fighter and a true
hero," she says.
Kyle has been having a tough time lately. His medication has not
been working so his parents and his doctor took him off of it completely
and started him on a second medication. That one caused him to have
shortness of breath, so they had to take him off of that one
slowly. Now they are in the process of starting him on yet another
one. So far it has not done much to control the tics. The
tics can be painful, but generally are more uncomfortable.
Kyle is more worried about what others think when they see him have a
tic. But Roy and Loli are challenging him to hold his head up high
and remind people that TS is a part of him and it is not who he is.
Because, contrary to what may have appeared in the media, most people
with TS do not blurt out off-color remarks or demonstrate socially
unacceptable behaviors. In fact, in most cases the symptoms are
quite mild. And because they are, many children and adults with TS
go undiagnosed and misunderstood for many years.
Loli is not only Kyle's mother,
but also his voice and advocate in educating others about TS. "Kyle has gone through a lot and
we are so proud of him," she says, and "I'm running for
him...he is my hero. This will be my third race to help me reach my goal.
My last race is the Houston Chevron Half Marathon in January (that's 13.1
miles... I am training very hard!).
Please work with me and share this story with others."
To help sponsor Loli in her next
race, please click here. Tax deductible
gifts help provide programs and services for people diagnosed with
Tourette Syndrome, including educating teachers about students
with TS, developing quality awareness materials to educate the community,
and funding a worldwide cutting edge research program to identify the
cause and find a cure for TS.
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TS in the Media
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TS was featured in the September 3, 2007 issue of Newsweek
magazine. The article, "Taking on Tourette's," focused on
how habit-reversal training may help reduce tics in some
patients. Learn More>>. TS was
also featured in a recent episode of "PrimeTime Medical
Mysteries" on deep brain stimulation. Learn More>>
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Support Group Spotlight:
Austin
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The
Austin Support Group meets the first Tuesday of every
month from 6:30 to 8:00 PM at Seton Medical Center. The group has
been very busy having fun this summer. In July, they held their
Second Annual Pizza and Swimming Party. It was a great opportunity
for the families to just hang out together. In August, the Round
Rock Express donated tickets to the group so they could all attend a
baseball game together. But it hasn't just been fun and
games. In June, a couple of parents met with two of Governor
Perry's Advisors for Budget, Planning and Policy to discuss TS, the
importance of the CDC/TSA partnership funding, and mental health
parity.
The group was lucky to have Sue
Conners speak at the Education Service Center for Region 13 in May.
About 50 educators were able to attend and the feedback was
fabulous. The group appreciated her taking the time to meet with
some of the families while she was in Austin as well.
Sheryl Kadmon spoke at
the August support group meeting and provided some great
tips for working with teachers and administrators. Sheryl's advice
is always appreciated, and the group hopes she enjoyed the hip hop
performance the kids group put together for her as well.
Dr. Bryan Jepson, Director of
Medical Services at Thoughtful House Center for Children in Austin, will
speak to the group on October 2. The annual holiday party will be
held in December and Dr. Karen Richards, a pediatric neurologist with
"Specially for Children" in Austin, will be the
speaker in February of 2008. Click here for more information on
the Austin Support Group.
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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
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.,
Tee-Off for Tourette on 10/21 or our major Gala on 1/31/2008),
- DONATING an
item or gift certificate for Silent Auction at Tee-Off or Gala,
- ORDERING a tribute card sent in honor of
someone's special event,
- PURCHASING a Macy's Shop For a Cause
shopping pass (for use on
10/13 -- see article above),
- PARTICIPATING in TEAM TSA events,
- CONTRIBUTING via cash, check or credit card to
our general fund,
- LINKING your Randall's Remarkable Card to
charity #2493, and
- REQUESTING a Kroger Share Card.
All donations are totally tax
deductible. Learn More>>
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"Bonne Nouvelle"
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Max
Pantin has
been invited into the Talented and Gifted Program at Duke University,
thanks to his incredible 95th percentile scores on the Math section
of the TAKS test. Madelyn Smith was commended on
both the math and reading sections of her TAKS test. Colton Matcha
was also commended and did not miss any questions in math or
reading on his TAKS test. Garrick Nichols
was fabulous in his lead role in "The Last Artichoke"
during his summer drama camp. Luke Miller was named a Music
Memory Superstar at his school for correctly naming the composer after
listening to several pieces of music ranging from Beethoven to
Sousa. Kyle
Hill recently received his orange belt in
Karate. Jacob
Walthall has been working hard programming and
selling his own computer games. Hal Kadmon has been named to
the Honor Society at the University of Houston School of
Engineering. Michael
Plante is the second double summa cum laude in UT
Dallas history, earning two bachelor's degrees in only 4 years, with a
3.949 GPA. 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 Cindy at
TouretteTexas@aol.com and
Shelley at srenmatcha@austin.rr.com.
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Bonne Nouvelle is published quarterly
by TSA of Texas. It is edited by Shelley Matcha and Cindy
Sacks.
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