Four new Youth Ambassadors and their parents attended a 2-day training on how to offer peer presentations about Tourette Syndrome and understanding and tolerance of differences. YAs and their parent team members also went to Capitol Hill and met with their local Congressional aides to advocate for TS-related issues and Federal funding. The new YAs, Kaylee Chin, Matt Sheeley, Kevin Fink, and Matt Eskenazi, were joined by seasoned NYHV chapter YAs Julia Gottlieb and Camerin Figueroa.

During her trip to the Hill, Kaylee Chin single-handedly convinced Congressman Eliot Engel’s staff that it was critical for Congressman Engel sign onto the “Dear Colleague” letter to show support for his constituents who are impacted by Tourette Syndrome.  Staffers were so impressed with Kaylee’s lobbying efforts that they invited her to return for a private tour the next day!

YAs Julia Gottlieb, Camerin Figueroa, and Kaylee Chin stayed on to attend the National Conference, and were joined by seasoned YA Benjamin Tamarin, who really enjoyed re-connecting with the YAs from around the country with whom he trained three years ago.  All of our YAs  participated in a variety of Teen Track workshops and bonded with teens and young adults with TS from around the nation.

“What a wonderful experience! Matthew made a lot of new friends and we are so grateful for the opportunity. All of the teens were brave and amazing.”      –Anne Marie Sheeley, YA parent team member

On Saturday April 5, Rachel Echols, a 7th grader at the Mildred E. Strang Middle School in Yorktown Heights, NY, and members from her swim team, Ace Aquatics, held “Rachel’s Race for Tourette Syndrome.”It was a fundraising and awareness swim competition which took place at the Saw Mill Club East in Mt. Kisco, NY.  The event raised over $6,000 that will go to support TSA’s programs of education, awareness, research and personal service.  Our thanks to Rachel and her mom Ellen Weiner for organizing an incredible program, and to their friends, relatives and members of Ace Aquatics for making it so successful. 

On Sunday, April 27^th Camerin Figueroa received a Human Rights award from The Minisink Valley Gay/Straight Alliance for his work as a Youth Ambassador and Big Buddy.  The event took place at the Upfront Exhibition Space, 31 Jersey Avenue, Port Jervis, New York, and was attended by 30 members of the club and their families.  Camerin gave a speech in which he said,  “Education is the best way to stand up to bullying.”

In December 2013, Camerin gave a well-received Youth Ambassador presentation to the club.

Some of my favorite activities in the Teen Track were the drawing class (where there was an animator for The Simpsons!) and the drumming/music class, where I learned that keeping a beat or simply hitting a drum was a good way to reduce stress and reduce my tics for a little while. My father found that although normally the abundance of information would be overwhelming, the experts presented in such a way that made it easier to understand. He thought the guest speakers during the lunches were inspirational as they spoke about their own personal experiences with TS. The final banquet had people sharing their talents, and bringing smiles and laughter to everyone in the room.

Overall, we both had fun meeting people from all over the country. We look forward to attending the 2016 Tourette Syndrome National conference.

Tourette Syndrome Awareness Month In Orange County

 Whereas, Tourette syndrome is a neurological disorder that is characterized by involuntary, rapid sudden movement and/or vocalizations that occur repeatedly; and

Whereas, Tourette syndrome affects more than 200,000 Americans and millions more worldwide who exhibit some symptoms, but remain undiagnosed; and

Whereas, Tourette syndrome can affect individuals of all racial, ethnic or social backgrounds and occurs more often among males than females; and

Whereas, many individuals diagnosed with Tourette syndrome often feel isolated and unaccepted by society because of lack of understanding relating to hidden effects of the disorder such as Attention Deficit (Hyperactivity) Disorder, Obsessive Compulsive Disorder, depression, mood disorder, learning disabilities, executive dysfunction disorder and sensory integration dysfunction; and

Whereas, through early diagnosis, early intervention and treatment, children and adults who have Tourette syndrome can and do live productive, meaningful lives in communities throughout Orange County, New York State, and worldwide: and

Whereas, it is vitally important that educational and community outreach relating to Tourette syndrome be supported and enhanced; and

Whereas, Mental Health Association in Orange County and New York Hudson Valley Chapter of the Tourette Syndrome Association seek to inform the community about Tourette syndrome and provision of services to individuals with the disorder; and

Whereas, Tourette syndrome Awareness Month provides an opportunity for advocates, families of children with Tourette syndrome and other caring individuals in the community to focus on the needs of people who have Tourette syndrome. It is fitting to increase public awareness among all residents of Orange County about this important matter.

Now, therefore, I, County Executive Steven M. Neuhaus, do hereby proclaim May 15 through June 15 2014 as                                              “Tourette Syndrome Awareness Month”

throughout Orange County, and I command this observance to all citizens.

HONORED DURING MAY FIFTEEN THROUGH JUNE FIFTEEN, TWO THOUSAND THIRTEEN

  _________________________________

STEVEN M. NEUHAUS

The TSA-NYHV Fall Family party took place on November 10, 2013 at the Westchester Marriott. Sixty-five chapter members and their friends socialized, dined, and vied for over 20 raffle items, including Best Buy gift cards as well as a remote control car and boat, and 3 silent auction items, all generously donated.Many attendees bought multiple raffle tickets and we had multiple raffle winners, happily announced by some of our young attendees.

We would like to thank Youth Ambassador Julia Gottlieb for her assistance making bracelets with the trendy Rainbow Loom, which was in use for most of the afternoon by both kids and young adults. Parents, teens, and kids also enjoyed the fall card-making station, especially using the card press to make some unique designs on their projects. We really appreciate Linda Sugrue for her time and professional card-making skills that made it such a success. We would also like to send a big thank you to DJ Billy Chin for spinning the tunes and setting the mood for the party.

Last, but not least, we want to thank Shelly Cooler, Ester Sharp, and Amy McWilliams for all their hard work behind the scenes. They not only organized the raffle and auction items, but were responsible for the set up, the fall decor, and all the details that really made it a festive celebration. Thanks again to all those involved and the attendees. We wish everyone a happy and healthy fall season!

“It was a really good first “play-date” and both boys really enjoyed it!”

“Thank you SO much for the effort you put into matching her with a girl her age, they have so much in common!”

“Just a quick note to let you know that we had a wonderful get-together today!”

“They had a lot of fun together!”

“My son loves having a big buddy–he really likes him!” Continue reading →

On 8/8/13 TSA-NYHV Youth Ambassadors Camerin Figueroa and Ben Tamarin (along with parents Jocelyn Figueroa, Sharon Hammer and Megan Ouderkirk) answered questions about TS on the Dr. Wodka Radio Show WTBQ, Warwick, NY, 8/8/13. The radio station estimated listeners of 3,000-5,000.

On 9/23/13 TSA-NYHV Youth Ambassador Benjamin Tamarin was honored to speak about the positive impact that the TSA has had on his life to the audience of 350 guests who attended the Jones Lang LaSalle Golf and Tennis Classic Dinner a the Westchester Country Club in Rye, New York. Continue reading →

The Chapter’s Youth Ambassadors this year are:

Camerin Figueroa, a 9th grader at Pine Bush High School. He likes learning about computers, hiking, biking and kayaking. Camerin became a Youth Ambassador in March of 2013 because he has been bullied in the past for having Tourette Syndrome and wanted to help prevent other kids with TS from being bullied. He also wants to be a great role model for younger kids with TS and to show that having Tourette’s isn’t a bad thing for someone to have. Continue reading →

On May 18^th, the New York Hudson Valley (NYHV) chapter partnered with Spincredible, a new fitness studio, for “Ride for Tourette”, a fundraising and awareness event to mark Tourette Syndrome Awareness Month.

Spincredible is a brand new fitness studio in Ardsley (NY) dedicated to indoor cycling.  Specially priced forty minute classes were offered all afternoon with all of the proceeds going to the chapter.  Spincredible’s owners, Patti and Alan Straub, ran the event along with TSA-NYHV board member Ester Sharp.  Instructors donated their time to the event and there also was a raffle and a healthful buffet as well as a “prize wheel”.  The prize wheel, a favorite with the kids, gave the participants a chance to win
prizes on each spin and also had facts about Tourette Syndrome written in some of the slots.

Craig Carton, co-host of the WFAN morning show who has TS, donated autographed copies of his book “Loudmouth” as prizes  Patti did much of the public relations work and appeared on a local radio show to publicize the event and chapter Executive Director Richard Yannetti phoned in for the segment, telling the audience about TS and the chapter’s programs.

Fundraising sign at Spincredible

TSA-NYHV Board Member Ester Sharp

Special “Ride for Tourette” candy bars from Spincredible

TSA-NYHV board member Shelly Cooler