Category: Public Policy

TouretteConnect – October

It's October, and while many of us are making plans to celebrate Halloween we cannot ignore some important causes the month sheds light upon. October is National Bullying Prevention Month, ADHD Awareness Month and OCD Awareness Week. Tourette Syndrome is an extremely layered and complex disorder and remains so vastly misunderstood among the general public. There is no one-size-fits-all approach, and because of this, the TAA partners with like-minded organizations that support our efforts. I encourage you to reflect on your journey with Tourette Syndrome and if you’ve been impacted by any of the above, please send us your personal story to help us join their efforts in elevating awareness for TS and co-occurring conditions.
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TouretteConnect – September

The month of September is National Suicide Prevention Awareness Month. I am grateful for the continued public awareness and open discussions about this very serious topic. In a recent Impact Survey led by the TAA, an alarming 51% of adults and 32% of parents of children with TS reported to have considered suicide or participated in self-harming behaviors. In light of this, there are a number of helpful organizations (AFSP, NIMH, NAMI) and resources to support you and your loved ones, including Chapters and Support Groups across the country. Please know that if you need help, there is always someone to call. A Support Group Leader from the TAA Florida Chapter shared a personal story about how suicidal thoughts impacted her family that really hit home for me.
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CDC Tourette Syndrome Program

Congress has left for August recess, but they landed a budget deal that will allow for deliberations on their spending bills. This includes the $2 million for the CDC Tourette Syndrome Program. To encourage support for this program, the TAA will be providing the State Chapters and Support Groups email drafts that you can send to your local Senator's offices. Get involved, and encourage your friends and family to reach out to their Senators to have them support the CDC Tourette Syndrome Program.
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What is Advocacy?

During our recent Youth Ambassador and Rising Leaders training in Orlando, Florida, we discussed the three basic types of advocacy: self, individual or systems advocacy. According to the Merriam-Webster Dictionary, advocacy is defined as “the act or process of supporting a cause or proposal: the act or process of advocating something.” Advocacy is not only lobbying your Members of Congress and Senators, though that is also an important part.
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Proposed Changes for Protected Class Drugs for Medicare Part D

Thanks to those who adovcate on behalf of the Tourette Syndrome community, the proposed changes to Protected Class Drugs for Medicare Part D were not included.
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The Importance of Educating Your Congressional Representatives

The importance of contacting your Representatives and Senators about Tourette Syndrome related issues and programming at their local offices.
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A Thank You to Chapter and Support Group Leaders

A special thank you to the chapter and support group leaders that helped with outreach to members of congress.
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The Impact of Advocacy Day 2019

Read a general summary on Advocacy Day and its impact on Tourette Syndrome.
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Protected Class Drugs in Medicare Part D

The Tourette Association of America has submitted comments on the proposed changes to protected class drugs in Medicare Part D.
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The Importance of Telehealth for the TS Community

For patients with Tourette Syndrome (TS) and Tic Disorders, it can be difficult to find specialists and many drive hours or travel lengthy distances for physician visits. This is especially true in rural areas.  The ability to conduct medical appointments/evaluations through a computer or electronic platform via telehealth could reduce leave from work and travel costs.
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