TouretteConnect November 2020

Dear Friend,

“Words matter.” It’s a phrase we hear and use frequently. It’s also something that can be a particularly tricky mine field for those living with Tourette Syndrome (TS) and, more specifically, coprolalia. In October, we shared with you a story out of Indiana where a young man living with TS was asked to leave his college campus as a result of offensive and unnerving phrases he involuntarily uttered. Unfortunately, this isn’t the only incident that has come across my desk in the last few weeks. In another instance, the police were called on a young high school girl as a result of a tic, despite her lacking any history of violence or aggression. Elsewhere, a man was fired by his employer of 7 years after ticcing a socially inappropriate and offensive word. In each of these instances the institutions who penalized these individuals were fully aware of their Tourette Syndrome diagnosis—an ADA-protected disability—and took little to no consideration of their words in the context of their actions or their character.

“Words matter.” So how do we use our words to combat the injustices so many in the TS community experience? We create change, eliciting compassion and understanding by sharing our stories and our experiences. We use action words, like advocacy, education, awareness and empowerment. These are words that motivate and inspire. The Tourette Association of America’s (TAA) upcoming Youth Ambassador training, for teens aged 12-17, and Rising Leader training, for young adults 18-25, are being held virtually on February 26 and February 27, 2021. These trainings, for which applications are now open, offer new and engaging ways for teens and young adults to learn how to speak up and advocate in local communities across the country. And National Advocacy Day, which will take place virtually on March 3, 2021, offers another opportunity for the community at-large to meet with local state representatives and discuss pressing issues that affect you and your loved ones on a daily basis.

“Words matter.” Words like compassion, inclusion, and understanding aren’t just buzz words to use to bolster one’s reputation or dismiss poor judgement – they are words that genuinely make a difference. With your help, we can spread awareness and understanding far and wide to ensure another college or high school administrator doesn’t unilaterally dismiss an otherwise kind, intelligent and deserving individual from their campus. To ensure another employer doesn’t dismiss a long-standing employee who has demonstrated professional success because they uttered a word they personally do not support. You can get involved whether or not you have TS. Join the TAA in an upcoming sibling support forum where you can learn how your role as a member of your sibling’s care team can lead to more support and advocacy on behalf of your sibling.

“Words matter,” but taking action in addition to using your voice matters more in the world we live in today. Please support our efforts to combat the ignorance that exists around Tourette Syndrome and those who live with it. With the holidays quickly approaching, use #GivingTuesday as an opportunity to share our messages and raise funds to support the TS and Tic Disorder community. Take advantage of the many resourcesevents or support networks we have available to energize your awareness efforts. We are in this together.

Gratefully,

Opera singer Jason Duika Discusses Tourette Syndrome

[Awareness]

Baritone Jason Duika is making a name for himself in the classical music world. Jason has performed notable roles with opera companies in Florida, California and New York.

He shares with the TAA how Tourette Syndrome has impacted his singing career, how it has shaped him into the person he is today and offers advice that he would give to his younger self when it comes to bullying and other issues related to TS.

Research Funding Opportunities

[Research]

The TAA invests in research that provides crucial insights into the understanding of Tourette Syndrome and Tic Disorders. The aim of these funding opportunities is to attract the best and the brightest into the TS research space, as well as to recognize good clinical research and its role in advancing understanding, unified treatment, and comprehensive care across the nation.

Researchers are encouraged to learn more about the TAA Young Investigator Award and the Clinical Research Training Scholarship in Tourette SyndromePre-proposals are due on December 4.

Get Involved in the Team Tourette Turkey Trot

[Support]

Kick off the holiday season with a Trot! Bring your family, friends, and pets together this Thanksgiving by participating in the virtual Team Tourette Turkey Trot.

Complete a 5K in your neighborhood between November 25-29 and share your progress with the Tourette Syndrome and Tic Disorder community by using the hashtag #TrotforTourette! The top 3 fundraisers will receive a TAA swag bag with a bunch of goodies!

Participate in Virtual Advocacy Day

[Public Policy]

Advocacy Day has gone virtual! Take this opportunity to discuss pressing matters facing the TS community with your local Representatives and Senators right from your own home!

This virtual event, being held on March 3, 2021, offers an affordable option for you and your family to create an impact. Share your story and let us know how making a difference matters to you. The TAA’s 50% off registration early bird special is available until December 31. Learn more and secure your spot today!

What's Happening

[News and Events]