TouretteConnect: Working Together, Living Better

Dear Friend,

What a year. It’s hard to believe that so much time has passed, but I am proud to say that we‘ve united in exceptional ways to charge forward. The Tourette Association of America made it our mission to develop quality support efforts and we were excited to see the highest levels of participation from the TS community ever.

Earlier this month we hosted our first-ever virtual Youth Ambassador and Rising Leader Training where we inducted 77 new advocates into our incredible network. They are tasked with helping us elevate the much-needed awareness for Tourette Syndrome and Tic Disorders. Though virtual, the experience of connecting with these incredibly resilient individuals is a defining mission moment for me. It always solidifies the WHY in all that we do. After the training, we hosted National Advocacy Day and it was one for the books. 265 advocates from around the nation joined virtual congressional meetings to advocate for the most pressing public policy issues facing our community. These priorities include continued governmental funding, telehealth, appropriations and more. Educating our lawmakers is key to effecting change, so I urge you to learn more about getting involved and joining our advocacy efforts.

We are working in tandem with our international alliances on global efforts, and we are excited to showcase some of this work during Tourette Syndrome Awareness Month, May 15 – June 15. Kicking off the month-long effort is our 2021 Virtual ConferenceAnd, wow, what a conference it will be. The programming is incredible and is expanded to support those impacted and beyond. Focusing on Working Together and Living Better, the three-day event will offer a comprehensive Research Symposium, a Newly Diagnosed Seminar and over 20 highly engaging educational programs for our community to learn and connect with each other. In addition, there will be accredited programming offered for education and health professionals to expand knowledge of the disorder to improve treatment and care. A few sessions that I am personally excited about include Understanding Oppositional BehaviorThe IEP/504 Plan Process SimplifiedDeveloping & Maintaining Friendships, and many others focusing on art, the brain, and other ways to discover strategies that can improve all of our lives.

These moments serve to showcase the work that we, the Tourette Syndrome and Tic Disorder community, are doing to combat ignorance and provide hope in every corner of the world. We are making headway, so please join us on this journey. Volunteer, get involved, or make a contribution to ensure the important work we are doing continues.

Gratefully,

Team Tourette T-Shirt Design Contest Winner

[Awareness]

Olivia, a TAA Youth Ambassador from Gainesville, Virginia, submitted the winning design for the Team Tourette T-Shirt Contest! She shares the inspiration behind the design:

“The TAA creates a safe community for people like me to be themselves and not have to worry about being judged. That’s why I found it fitting to include the phrases ‘no stigma’ and ‘no judgments’ on a Team Tourette t-shirt.” – Olivia

Register for a Team Tourette event today to receive a t-shirt!

Coronavirus Survey Results

[Research]

In the past year, those impacted by TS and Tic Disorders have experienced a heightened state of symptoms that most will never understand.

Earlier this year, the TAA developed a survey to learn more about how the pandemic affected our community. The results of the Coronavirus Survey have helped the TAA assess the impact of COVID-19 and therefore advocate better for the community. View the results of the survey and read what leading experts shared on the COVID-19 vaccine and TS.

Provider Webinar Series

[Support]

Medical and allied health professionals are encouraged to join the TAA for the Provider Webinar Series!

This professional development webinar series is designed for those involved in the care of individuals living with TS as well as those who are interested in learning more about TS treatment and management. Free CMEs are available!

Support for the Safe Step Act

[Public Policy]

The TAA supports the Safe Step Act, which would require group health plans to provide an exception process for any medication step therapy protocol. Step therapy is a utilization management tool used by health plans to control spending on patient’s medications. While step therapy can be an important tool, in some circumstances, it has a negative impact on patients, including delayed access to the most effective treatment and severe side effects.

The Safe Step Act improves the ability for the TS community to receive prescriptions. Learn more about the importance of the Safe Step Act and take action by sending a letter to your elected officials.

What's Happening

[News and Events]

* In support of improving patient care, this activity has been planned and implemented by Amedco LLC and Tourette Association of America, Inc. (TOU). Amedco LLC is jointly accredited by the Accreditation Council for Continuing Medical Education (ACCME), the Accreditation Council for Pharmacy Education (ACPE), and the American Nurses Credentialing Center (ANCC), to provide continuing education for the healthcare team.