NJ Center for Tourette Syndrome and Associated Disorders (NJCTS) hosted their first ever Global TS Teen Summit on August 7 and 8. The fully virtual event was held in conjunction with the annual NJCTS Tim Howard Leadership Academy.
When the Leadership Academy was moved online because of the pandemic, NJCTS saw it as an opportunity to open the educational sessions to teens from around the globe. Attendees were given the chance to learn about their Tourette Syndrome and connect with other teens who share their experiences.
The participants represented 16 states from California to Massachusetts, and six countries including England, Canada, Italy and New Zealand.
In addition to the presenters of each session, the teens heard from young adult mentors, or coaches, throughout the two days. Some of the topics covered included navigating through high school and college with TS, coping strategies and therapies, and being your own advocate.
Session recordings:
Who Really Knows about TS?: Three Perspectives — Dr. Michael Rubenstein, Dr. Robert King, and Dr. Marla Diebler
In this interactive session, you will hear from three different practitioners who treat Tourette Syndrome and commonly associated diagnoses (such as OCD or ADD). Learn how a psychologist, psychiatrist, and neurologist help teens with the management of TS and how each of these practitioners offer something a little different from each other.
Changing your Behavior, Not Yourself: The Uses of CBIT —Dr. Jeremy Lichtman
CBIT is increasingly seen as an effective tool for managing tics and obsessive-compulsive thoughts and behaviors. In this session, you will hear from a psychologist who works with teens with TS and learn—and witness through a demonstration—exactly how CBIT works and whether it might be right for you.
Where we are From, What we Know, Where we are Going: The Biology, Genetics, and Research Around TS—Dr. Jay Tischfield, Dr. Gary Heiman, and Dr. Caroline Hayes-Rosen
Learn more about what’s actually happening in the brain during a tic, and hear from geneticists and researchers from the Rutgers University Cell and DNA Repository, the largest repository in the world conducting cutting edge research on TS. Learn more about the genetics of Tourette Syndrome and how it appears within families, and hear the most current, cutting-edge developments in TS research.
Sharing His Story – Ray Nardella
Personal stories of growth and triumph inspire us to live our best lives. Listen to our guest speaker talk about how his Tourette Syndrome has impacted his life and how he became the success he is today.
Ask the Experts: A Coach Panel on Navigating the Social World
Perhaps no one understands the issues teens with TS face better than those who have been there and walked the walk. Hear our young adult coaches talk about their experiences navigating important issues—such as driving with TS, dating, coping with college dorm life, employment experiences, and more!
A Conversation with one of the GreaTS —Tim Howard, Soccer Legend
Join us and hear from one of the GreaTS himself! Tim Howard will share his experience as a teen with TS, what support he had and relied on, and how that has allowed him to have the success he has today.
Speak Out, Rise Up: How to Grow your Message and Tell your Story —Eryn Travis
As TS is often misunderstood, it is critical, as a teen, to find your voice, correct misunderstandings, and self-advocate. Learn in this session the critical skills of public speaking, how to grow your message, and how to use your story and experience as a way to move and inspire others.
Help me Help you: A Practical Guide to School Accommodations —Staci Greenwald, Esq., Bob Haugh, and Dr. Lisa Cox
Learn some tips and strategies for navigating through high school and into college as a teen with Tourette Syndrome, including understanding and gaining responsibility for your IEP or 504, preparing to carry that responsibility into college, knowing what to expect of your professors, and understanding your legal rights.
Sharing Our Story: Parent and Child —Robyn and Analise Twemlow, Tourette Association of New Zealand
Personal stories of growth and triumph inspire us to live our best lives. Listen to our guest speakers talk about how they’ve navigated that as parent and child.
Ask the Experts: A Coach Panel on Carrying the Message Beyond the Summit
Perhaps no one understands the issues teens with TS face than those who have been there and walked the walk. Hear our young adult coaches talk about the many ways they have carried what they learned at the NJCTS Tim Howard Leadership Academy beyond to advocate for themselves and others.
Find your Magic—Chad Juros (recordning coming soon)
Finding the “magic” in your life is critical to living your best life and being your best self. Hear the inspiring story of survival and strength, wrapped into the entertainment of a virtual magic show.