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Category: Public Policy

Happy Tourette Syndrome Awareness Month! It is my favorite time of year, with exciting programs and awareness initiatives for all. What I love most is our community coming together in monumental ways to lift each other up through stories, togetherness, and local communities lit up Teal in the name of Tourette Awareness. We recently shared a powerful video that showcases the realities of the condition as well as the physical and psychological impact. In collaboration with AIST Onlus Associazione Italiana Sindrome di Tourette, we discussed the heightened need for awareness on a global scale and how kindness, compassion and knowledge can go great lengths.
While the hustle and bustle of the day continues, the work the TAA is doing is for each of you. We are inspired by you. We are always learning from you. We are here for you, giving the support you need. The spring affords ample opportunities to get connected and involved from free or low-cost programs such as Virtual Conference, our Provider Webinar Series, Miles for Tourette and more. Next month will kick-off Tourette Syndrome Awareness Month and you can look forward to fun and engaging ways to join us in raising awareness.
While telehealth has been a public policy priority of the TAA for several years, during the COVID-19 pandemic we have seen a drastic increase in the utilization of telehealth across the nation, proving its value. The TAA is working with other patient groups and coalitions to help promote the continued and expanded reimbursement of telehealth services beyond the pandemic.
’ve spent a fair amount of time thinking about what I’d like to say to you all this holiday season. To be honest, I’ve struggled to steer clear of being too cliché, too negative, too positive, or too predictable. I’ve struggled with these thoughts because it’s been such an unpredictable time in an uncertain year. When we gathered together in January to plan the year ahead, the TAA team and I could not have imagined a year like 2020. Above anything else, this was a year where our need for one another was highlighted, bold-faced, ENLARGED. We needed to acclimate, pivot, and turn on a dime — that’s something the TAA has done particularly well in the face of COVID-19.
“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.
2020 has certainly proven to be one of the most unpredictable and challenging years for everyone. While the uncertainty of the pandemic may have made us rethink how we support the community, it did not derail us. In fact, by the close of this year the Tourette Association of America will have tripled our virtual offerings, with almost 100 virtual support initiatives – from a free Virtual Conference, weekly webinars, a Virtual Gala and virtual walks around the country. To continue at this pace, we need your financial support.