Welcome to LITSA
The Tourette Syndrome Association, Inc., or TSA, is the only national voluntary non-profit membership organization in this field. Its mission is to identify the cause of, find the cure for and control the effects of this disorder. Today, TSA has grown into a major national health-related organization with approximately 50 U.S. Chapters and 300 support groups, and International Contacts around the world.
The Long Island chapter of the Tourette Syndrome Association (LI-TSA) is run by volunteers. Our mission is to provide help (at the community level) to families affected by Tourette Syndrome by providing services to its members in Nassau and Suffolk counties.
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***Save the Dates***
April 10th - "It’a Bug’s life!"
~ See below for details ~
Friday, April 10th
7:30 - 9:00PM
DeMatteis Center/101 Northern Blvd./Greenvale, NY 11548
- It's a bugs life -
It’a Bug’s life! Insects are all around us, sharing space and resources with us. Most of them do us no harm, and many are very helpful. Learn all about the fascinating world of insects, how they have managed to be so successful and how some of them take really good care of their children. Play guessing games, draw pictures, and have fun!
~ THANK YOU ~
to Dr. Alyson H. Sheehan, from the ASPIRE Center for Learning and Development, in Melville, for her inspiring presentation today! Dr. Sheehan spoke on the intricacies of engendering social skills in children and adolescents with developmental delays. Social deficits are a recurring theme in individuals with TS, and many of the points raised at the talk resonated with families in the audience. Dr. Sheehan answered many questions and shared much valuable insight with our chapter members. We hope to have her speak again in the future, focusing on disruptive behaviors, which is one of her specialties. Thank you, Dr. Sheehan.
Dr. Sheehan has graciously offered to share her powerpoint presentation with us. It will be posted on the ASPIRE website
~ THANK YOU ~
Thank you to all those who came out to hear the informative presentation by Dr. Christman. The insight he shared from his expertise with OCD was so greatly appreciated, and will help many of our members have a greater understanding of these issues. We are so excited and so appreciative that Dr. Christman has agreed to come back and we look forward to hearing his presentation on Anxiety.
~ Pooch Social ~
Everyone had an amazing time interacting, playing games and doing activities with certified therapy dogs at the DogAbility Center! Everyone also enjoyed the opportunity to mingle and have pizza, drinks and dessert
Thank you for all of you who came out and enjoyed bagels, juice, soda, pop corn, catching up and lots of laughs watchingAlexander and the Terrible, Horrible, NO Good, Very Bad Day
LI-TSA expresses its sincere appreciation to
for her very informative workshop on Preparing For College. The information was extremely well received and all attendees were so grateful for the helpful handouts, strategies and timetable discussed to begin this journey!
Call for input regarding possible adult support/social meetings
In response to several inquiries, and in an effort to reach and serve all members of our Long Island Community, LI-TSA is considering arranging occasional support group meetings and/or socials for adults with TS. Before we can move forward with these plans, we need to get a good understanding of the needs in our community, and the types of activities individuals are looking for.
If you or someone you know would be interested in participating in an adult support group or social, and/or have ideas about the type of activity you would find useful and appealing, as well as the frequency, please contact us at:
New Research Program for Children and Adolescents with Tourette's Disorder
Tourette’s Syndrome is a neurological disorder involving motor tics (eye-blinking, mouth movements, head jerks, shoulder shrugs and arm/leg jerks) and/or vocal tics (fast meaningless sounds or noises, grunting, barks, shouting out single words or sentences, or repeating words) that start in childhood and persist over time.
Patients with mild symptoms of Tourette’s Syndrome are treated with behavioral techniques, but more troublesome cases require the use of drugs. Also, the diagnosis and treatment of Tourette’s Syndrome is complicated due to additional conditions including attention deficit/hyperactivity disorder (ADHD), obsessive-compulsive disorder (OCD), anxiety, and depression. These problems often require patients with Tourette’s to receive other medicines as well.
While the exact cause of Tourette’s Syndrome is unknown, disturbances in the chemicals controlling the nerves in the brain (neurotransmitters) are thought to play a major role. . Your child is invited to take part in a new clinical research program sponsored by Psyadon Pharmaceuticals which is using PSYRX101, a synthetic drug, where the active ingredient it Ecopipam, that acts as to stop the actions of one of these neurotransmitters and to help relieve the symptoms of Tourette's.
Dr. Cathy Budman’s practice, in collaboration with the Feinstein Institute for Medical Research, is seeking those with a diagnosis of Tourette’s Syndrome and are willing to participate in this novel approach at treating tics in children and adolescents.
You CAN participate if you:
- Have Tourette’s Syndrome
- Exhibit both motor and vocal tics
- Are male or female, ages 7 through 17 x Weigh over 20kg (45lbs)
You CANNOT participate if you:
- Have a history of schizophrenia, bipolar disorder, or other psychotic disorders
- Have a history of attempted suicide
- Have had a major depressive episode in the past 2 years
- Have a history of seizures
- Have had a myocardial infarction within the past 6 months
- Is a Female who is pregnant or lactating
If your child is currently taking some medicines for their Tourette’s, they may need to stop taking them before they can take part since these other drugs may complicate the test. Please speak with Dr. Budman about what this will mean for your child. If you or someone you know would be interested in participating in this clinical trial, please call: Bibu Jacob, research coordinator, at 516-562-1012 or e-mail at bjacob3@NSHS.edu.
Chrissy Demers, Research Nurse
Cathy Budman, MD
400 Community Drive
Manhasset, New York 11030
Phone: (516) 562-3223
Fax: (516) 562.3997
~ Thank you ~
to everyone who came out to support Family Fun Day
to help make our annual fundraiser such a great success!
We couldn’t have done it without you!
We hope you had as much fun as we did!!
This event was sponsored by:
TEAM TSA National Awareness 5K Walk
Thank you to everyone who came out to walk and support LI-TSA
- With a special thanks to the Alessandri family and their friends for their support!
The Muise family leading a sea of teal...
Dylan and Cody Brady of "The Brady Brothers" from the Long Island Chapter performed along with other entertainers. Here are Dylan and Cody with 2 of their fans - Victoria & Emma
With sincere appreciation to Dr. Sonnenklar for sharing her expertise at her very informative Parenting Workshop. The information shared, as well as the interactive discussion, provided all attendees with helpful and inspiring strategies to take home.
LI-TSA expresses its heartfelt thanks to
Dr. Laura Braider
who so generously shared her time and considerable expertise with us on Sunday, March 2nd. Chapter members went home with some very effective tools to add to their parenting toolbox, and hope that consistent use of those tools will lead to better self-control and cooperation in their children, and a happier home.
Congratulations to LI TSA's newly trained YAs Ben Rabinowitz and Jake Gilbert proudly wearing their teal ties as they lobby on Capitol Hill
TSA 2014 National Conference
Trip to the Hill and Youth Ambassador training was a huge success.
March 20-23, 2014
Crystal Gateway Marriott Arlington, VA
Our very own LI TSA Jen Zwilling, founder of the TSA Youth Ambassador Program, begins the day of training the new group of 47 2014 Youth Ambassador teams!
Newly trained 2014 YAs Ben Rabinowitz and Jake Gilbert with 2012 YA Steven Argenzio and our 2014 Junior Ambassadors Charles and Chris League
Youth Ambassadors Steven Argenzio and Jackie Beckhardt had the opportunity to spend time with Hollywood star Dash Mihok
A sea of teal took over Capitol Hill today as over 180 Youth Ambassadors, Chapter Leaders and TSA members and families attended a Congressional Luncheon and then had a full day of meetings with their local Representatives to advocate for Tourette Syndrome!
Nowhere else can people come together in a warm, family-like atmosphere to learn from the nation's primary practitioners and researchers in the field, while gaining support, building friendships, and sharing experiences with peers.
The National Conference offers sessions for adults with TS, parents, teens and professionals on a variety of topics grouped by track, as well as provides networking opportunities.
LI TSA had a great Morning at the Movies....
as The Lego Movie states....
"everything is awesome"!
Bagels, juice, soda, pop corn, catching up!
We had a theater to ourselves! Priceless!
to everyone who came out to join in the fun and festivities
of our annual year-end holiday party!
Family members from kids, to parents and grandparents
had a truly merry evening.
(Click the picture above for more pictures!)
~~ On June 5th Dr. Budman Chaired a symposia she organized ~~
The symposia, Tourette Syndrome: What Makes someone Tic,
was part of the Centricity Series, Biomedical Research Symposia at The Feinstein Institute for Medical Research. It was extremely well attended by researchers and physicians and was a great success.
LI TSA extends heartfelt gratitude to Dr. Budman for all she does for those living with TS.
Jen Zwilling, founder of the TSA Youth Ambassador Program presenting Representative Peter King with the National TSA Public Policy Award at Congressional Briefing in the Capitol on March 21, 2013
Coming soon: Click Here for more Photos