TouretteConnect January 2018

The new year brings renewed focus on things of importance and the resolve to achieve our goals.  The Tourette Association of America’s resolve remains steadfast as we provide support, help and hope to those impacted by Tourette and Tic Disorders. We are starting the new year off strong! In this month’s Tourette Connect, you will read about the multinational effort to track outcomes for patients with Tourette Syndrome who undergo deep brain stimulation (DBS), a new series of online support groups for both young adults and parents, and our involvement with the Movement Disorders Policy Coalition.

Don’t forget to register for the 2018 National Education and Advocacy Conference. The largest conference dedicated to the Tourette and Tic Disorder community, the conference brings together experts in the field to address a variety of topics for the newly diagnosed and for those interested in learning more.  We are pleased to announce that Anthony Ervin, four-time medalist and Olympic swimmer will be our keynote speaker this year.  Do not miss this opportunity to hear from Anthony about how his Tourette Syndrome has played a role in his success.

Thank you again for your continued support and involvement in the Tourette Association of America.  To learn more, follow us on social media, call our office, or visit our website.

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2018 National Education Conference & Advocacy Day


March 1, 2018 – Newly Diagnosed Seminar   
March 2 – March 4,  2018 – National Education Conference   

Join us at our 2018 National Conference in Arlington, VA! This is the most comprehensive conference on Tourette Syndrome and Tic Disorders nationally. The conference brings together experts in the field of Tourette Syndrome and Tic Disorders and provides insight and education to adults, teens, parents and professionals on a variety of topics relevant to the Tourette and Tic Disorder community. Special appearance and keynote address by four-time Olympic medalist Anthony Ervin!

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Advocacy Day


March 1, 2018     

Please join the Tourette Association of America as our sea of teal heads to Capitol Hill! The Congressional Children’s Briefing on Tourette Syndrome and the TAA will arrange meetings with your Member of Congress and Senators to discuss key policy priorities for Tourette Syndrome and Tic Disorders for 2018.  You must register to attend by February 2nd. Click below for more information and to register.

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Educating the Educators on Tourette Syndrome


Kathy Giordano, Chair of the Tourette Association Educational Board and Educational Specialist, engaged an audience of middle school educators in Kinston, North Carolina during a Tourette Syndrome education presentation. The presentation provided the educators with the ability to both recognize and provide positive support for symptoms of Tourette Syndrome and common related challenges.

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Deep Brain Stimulation Study


In partnership with the Tourette Association of America, neuroscientists at the University of Florida’s McKnight Brain Institute are leading a multinational effort to track outcomes for patients with Tourette Syndrome who undergo deep brain stimulation, an established treatment for other movement disorders that’s now being tested as a potential means to decrease the motor and vocal tics of Tourette Syndrome in certain patients.  The results of the study can be found in JAMA Neurology. Click below to read more.

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NEW! Online Support Group


In cooperation with the Centers for Disease Control and Prevention, the Tourette Association of America is pleased to offer a new series of online support groups for young adults (ages 17-26).  These support groups are available for people located in areas without easy access to support.  Each support group will meet approximately every other Tuesday, twice a month, for 6 months.  These groups will be moderated by Eva Tukuafu, MSW, LCSW.  Space is limited. For more information and to sign up, click below.

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Movement Disorders Policy Coalition

[Public Policy]

The Tourette Association of America has joined the Movement Disorders Policy Coalition (MDPC) to inform people with Tourette Syndrome or Tic Disorders about policy that impacts patient access to approved therapies and appropriate clinical care.  The MDPC will advocate for changes to utilization management practices that block patient access, including: prior authorizations, step-therapy, specialty-tier medications with high co-insurance and non-medical switching.  For more information on the MDPC, click below.

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2018 National Awareness 5K Run & Walk


Sunday, May 20, 2018

SAVE THE DATE for our annual National Awareness Certified 5K Run and Walk! Join us for a morning of entertainment, food, and fun! Our walk raises funds to increase awareness and helps us continue our mission to make life better for all those affected by Tourette Syndrome and Tic Disorders. Can’t make the National Walk? You can host your own local walk during awareness month or anytime throughout the year!

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Theodore Perdik

[TAA Spotlight]

Theodore Perdik is the Development Associate for the Tourette Association of America.  In this role, he manages Team Tourette and all fundraising marathons held by the Tourette Association of America.

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