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April TouretteConnect

It has been nearly six weeks since we all began actively working to flatten the curve, and the TAA has been doing our part by staying home. These last few weeks have been a test on all of us mentally, physically and emotionally, but it has also taught us a lot about our community. Each of you in the Tourette Syndrome and Tic Disorder community embody strength and resilience every single day, pandemic or not. It has also allowed for some of the most productive, collaborative and creative times to develop new and exciting programs and information.

The driving factor is knowing and understanding the importance of the work we are doing on behalf of a community who may be experiencing heightened symptoms and in-need of support. Many in-person events that bring our community together have been postponed or cancelled. There are people who don’t know anyone else with TS and they wait all year for these events to interact with and learn from each other. These cancellations are a tremendous loss, but we have mobilized virtual programming to ensure that, at the very least, you have information to help you day-to-day until this ends.

In the last five weeks we have launched nearly 20 virtual programs and resources that are specific to COVID. In addition, we launched a free and accessible two-day Virtual Conference on May 15 & 16. This event will provide an opportunity to learn and engage with each other throughout a variety of web-based sessions.

While we continue to navigate the national health crisis, we are grateful that we can still remain connected to those near and far thanks to virtual communications. We want everyone in the Tourette Syndrome and Tic Disorder community to know that while we may not see you every day we miss you, we care about you, and we are here for you. We will get through this together.

With gratitude and appreciation,

 
 
 

 

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COVID-19 Resources  [Awareness]

Over the last five weeks the TAA has mobilized efforts to ramp up virtual resources for the TS community surrounding the pandemic. Our COVID-19 resource page features a number of informative webinars, blogs and additional resources that help teens, families, adults, educators and medical professionals navigate this unfamiliar time and expands to cover support for heightened co-occurring conditions. We are continually launching new informative webinars to make you feel less alone and more prepared. Have a topic or idea for programs? We’d love to hear from you. Click the link below to fill out a submission form.
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Treating Tourette Together (TTT) Community Report [Research]

TTT was a collaboration between the Tourette Association of America, the Patient-Centered Outcomes Research Institute, and a planning committee of leading researchers and advocates in the field of Tourette Syndrome and other Tic Disorders. This effort specifically looked at Comprehensive Behavioral Intervention for Tics (CBIT), and how CBIT could be improved. The summit was held to generate ideas about how to best move forward.
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Virtual Conference
[Support]

Join the TAA on May 15 and 16 as we host our Inaugural Virtual Conference. This two-day event features programs geared towards adults, parents, teens, educators and medical professionals. In addition to support resources, we welcome Dylan Brady as our keynote speaker to share his experiences with TS as a rising musician. Dylan will also give a special performance. In addition, Fitness expert Danielle Natoni will teach Yoga and HIIT classes to raise the energy each morning.

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Outreach efforts lead to Congressional Support
[Public Policy]

On March 4, we hosted National Advocacy Day in Washington, D.C. While a group of advocates were rallying at our nation’s capitol, this effort spanned the entire US. Members of the TS community contacted their elected officials to urge their participation in the 2020 Public Policy priorities.

Collectively these visits to elected officials, as well as letters, emails and other methods of outreach, were instrumental in achieving a record number of signers in the House and Senate supporting the Fiscal Year 2021 continued funding of $2 million for the CDC Tourette Syndrome Public Health Education and Research Program!

We experienced record numbers with 108 bipartisan Members of Congress, and 25 Democratic Senators, signing onto the letters of support for the funding.

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What’s Happening
[News and Events]

*The Warren Alpert Medical School of Brown University designates this live activity for a maximum of 1.0 AMA PRA Category 1 Credits™. This credit is accepted by the AAPA and AANP. Physicians should claim only the credit commensurate with the extent of their participation in the activity.