Welcome to LI Tourette Association
The Tourette Association of America, 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 Tourette and Tic Disorders. Today, Tourette Association of America 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 Association, also known as LI-TSA is run by volunteers. Our mission is to provide help (at the community level) to families affected by Tourette and Tic Disorders by providing services to its members in Nassau and Suffolk counties.
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***Save the Dates***
Have a Great Summer!
~ See you on ~
9/11/15 First support group of the 2015 - 2016 school year.
Research Opportunity in Tourette Syndrome
The Tourette Association has a great opportunity to advocate to be potentially included in federal legislation known as, H.R.292/S.849 The Advancing Research for Neurological Diseases Act.
Prevalence data on Tourette Syndrome in children is inconclusive and contains conflicting results. In addition, there is little to no information on the impact of the disorder in adults. This bill could establish the prevalence of Tourette and help close the gap between identified and undetected cases, especially among ethnic and racial minority populations in the U.S. The bill could also provide for surveillance of Tourette in the U.S. that could provide insights into the long-suspected environment role in the development of the disorder.
Send Congress a letter of support for this bill and invite your Senators to attend an educational briefing to learning more on this issue. On September 16, 2015 the Tourette Association, Parkinson's Action Network and the MS Society along with 8 other Neurological Disease Associations will be holding a Briefing on H.R. 292/S. 849 The Advancing Research for Neurological Diseases Act.
Tourette Advocacy for Student and Education Services
Since 2006, Members of the Tourette Association have witnessed the powerful role policy has in supporting students with disabilities when Tourette Syndrome was included within the Individuals With Disabilities Education Act (IDEA). As Congress discusses ways in which to improve the education system and hold students and teachers accountable we invite you to voice your concerns and relay 3 specific recommendations on how to meet the needs of students with Tourette and Tic Disorders.
We are happy to announce the 2016 Tourette Association Youth Ambassador Training will be held Tuesday, March 8 through Thursday, March 10 at the Crystal Gateway Marriott in Arlington, VA.
The Youth Ambassador Training is a comprehensive training aimed at creating exceptional teen leaders and Tourette advocates. Youth Ambassadors will receive guidance on public speaking, on how to give a concise presentation on TS and presentation logistics. The Training also includes participation in the Tourette Association's annual National Advocacy Day.
The Tourette Association seeks at least one teen and parent/guardian team from each Tourette Association chapter (or at least one team per state not served by a Tourette Association chapter) to attend. Please
for more information & the application. Applications are due
Friday, November 6, 2015.
LI's Dr. Budman at World Congress on Tourette and Tic Disorders
LI's Dr. Budman, at the recent World Congress on Tourette and Tic Disorders in London, England (in center of photograph), with Professor Mary Robertson, Emeritus Prof Neuropsychiatry UCL, Visiting Prof & Hon Consultant St Georges Hospital London, England with other female Tourette specialists from around the world,
all who were mentored by
At the World Congress on Tourette and Tic Disorders, Dr. Budman presented a poster entitled “Tourette Syndrome in African Americans: Rare or rarely diagnosed” ; was a co-author on a number of other posters featuring new findings in genetics; and along with four other international TS experts, Dr. Budman's work was selected for a Symposium on Anxiety and Mood Disorders.
FAMILY FUN DAY!
Thank you to everyone who came out to support our
Family Fun Day
on Saturday, and a special thanks to those of you who volunteered
long hours of your time before the event and at the event itself 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!!
Check back soon to see the Photo Album!
~ Thank you ~
to everyone who came out to join and support us on the annual
Tourette Awareness Walk!
We were so happy that the weather held. It was a glorious spring day, and a great opportunity to chat as we walked through the lovely park. We had free access to the zoo and Science Museum as well! Truly a fine time.
After the walk, James Durbin thrilled participants with an exciting solo performance!
The day was made even brighter because our chapter came in second place for donations, raising $3,354.00!
Way to go Team Long Island Tourette Association!
Special thanks to our Long Island Team members who did an incredible job fund-raising!
Congratulations to our LI Youth Ambassadors who were the top team fundraisers!!
Chris Alessandri $1186
Samuel Gil $1,077
Jack Muise $538
And huge thank you to ----
Maria Pusateri $348
Lisa Filippi $ 151
Cynthia Purschke $26
Margarita Velez $26
CONGRATULATIONS to Billy Reilly from Team Long Island who crossed the Finish Line first!
(even though he made an incorrect turn and put more milage on his run!)
Billy will be competing in a Triathlon this coming weekend in San Francisco and funds raised are designated for Long Island Tourette Association!
Wishing Billy the best of luck next weekend...and we will keep you posted on the results!
Your Friends, the Board of Long Island Tourette Association
TSA Youth Ambassadors, Board Members, Chapter Leaders and NY Constituents with New York Senator Charles Schumer
On March 23 and 24, TSA trained over 40 new Youth Ambassador teams from across the country in Arlington, VA and prepared them for National Advocacy Day in Washington DC on March 25. This trip marks the Association's largest, most successful Advocacy Day to date, with over 180 TSA Chapter leaders, Youth Ambassadors and members participating in a total of 169 meetings with 65 Senate Offices, including with New York Senator Charles Schumer, and 104 House of Representatives Offices. You can read more about Advocacy Day here.
LI TSA extends a huge heartfelt thank you to
for his powerful and extremely informative presentation today at the Rusk Auditorium of NSLIJ. This presentation launched what we hope will become a series of presentations sponsored by LI-TSA and the Tourette Syndrome Center of Excellence at NSLIJ. Mr. Halligan's presentation on bullying, cyber bullying and teen suicide provided the audience with valuable information, insight and thought-provoking discussion on a topic that is so very relevant in today’s society. The tools he also provided will certainly aid all attendees in dealing with these very serious issues in their families and in schools. Thank you Mr. Halligan!
Please click the following links for downloads from the Workshop:
~ 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 Jack Muise, Christopher Alessandri, Samantha Scileppi.. All proudly wearing their teal 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